Just a Few Helpful Tips for Those who are Newly Diagnosed

[Kendrew]

When you're first diagnosed with PMR/GCA, it can feel a very confusing time and a very scary time. There's so much uncertainty about the future and you'll find yourself asking questions like:-

How long will the condition last? How will the steroids affect me? What will I experience? Why do I feel a certain way?...and many more besides.

This overwhelming bombardment of 'changes' can make you feel like you've lost all control over your own health & well-being, but you haven't! There's much you can do to help yourself as I've discovered during the 5½yrs I've had PMR.

I started on 15mgs of prednisolone and I'm now down to 1½mgs of prednisolone.

Like many people on the forum, I was extremely active, fit & healthy before my diagnosis, so I explored all the ways I could enhance my 'new' health status and mitigate any potential side effects from the steroids.

As individuals, our needs will differ greatly, so you have to cherry pick from the information you find. It's not a case of 'one size fits all'.

Learn as much as you can from reliable & trustworthy sources such as :-

-this forum

-PMRGCAUK

-your local Support Group

-medical professionals (as long as -you're confident they're knowledgeable regarding PMR/GCA)

-fellow sufferers (to share experiences)

These have been my main sources of gained knowledge & useful information.

Because in my own daily life, there are a number of important considerations relating to my PMR that I'm constantly addressing, I thought any of you that are newly diagnosed, might find these helpful too. These include:-

MY DIET:-

Unfortunately, weight gain is frequently a consequence of long term steroid use. This is mainly because steroids can potentially make your body metabolise sugars in a slightly different way to normal, causing more fat to be deposited in the body.

There are steps you can take to help prevent or minimise this from happening though.

Probably the most effective thing you can do is follow a very low carb (but not necessarily a no carb) diet. How strict you need to be regarding the carb intake will vary from person to person and you will have to decide for yourself what's appropriate for you. This will really only be obtained through a 'trial & error' process.

A low carb diet does work though and many people have successfully lost weight this way.

I definitely had to research all this though, in order to help me understand the foods I should (& probably shouldn't) be eating.

Steroids can make some people feel very hungry, and I find that eating at regular intervals throughout the day seems to combat this.

It's a case of 'little but often' for me.

I also try to avoid processed foods, so no ready meals, or anything that has an array of more than 4 to 5 ingredients in it where possible. (the more ingredients on the list the more chance of unwanted additives, preservatives, etc) Many of these 'added' ingredients can potentially have a negative effect on the body's inflammatory levels and we want to avoid that if possible.

I eat lots of fresh fruit & veg (lower carb ones though) lots of fish & chicken for protein, nuts & seeds, wholegrains, and when I do treat myself, it's usually with home baking so I know exactly what's in it!

MY ACTIVITY LEVELS:-

I work within my own individual capabilities but I do go to the gym most weekdays and enjoy frequent walks around my locality. I also do 'yoga for osteoporosis'.

I've learnt the importance & necessity to pace myself and not push myself further than I'm capable though.

With PMR/GCA, overworking yourself is unlikely to improve your strength & stamina and more likely to cause a flare of the condition! Some exercise is definitely helpful though, if only as a maintainance tool to help prevent or slow down potential muscle wastage.

Just remember that rest is just as important as maintaining some level of activity.

HYDRATION

I drink plenty of water each day because good hydration helps prevent constipation, maintain healthy kidney function and support the bodies other vital 'systems'.

HAIR, SKIN & NAILS:-

I found at higher doses, the steroids caused my hair to thin and feel much finer. I didn't panic, but I ceased from having any hi-lights or hair dyes put on it and just used gentle shampoos and continued to have regular trims. I kept the use of hot styling 'aids' to a minimum too. I'm now on a much lower dose and able to have my hi-lights done again. Woohoo!

I also found my skin became much more fragile and seemed 'thinner' in appearance. It took longer for scratches & cuts to heal and longer for them to stop bleeding. Bruises appeared on a daily basis from the slightest of 'bumps'. All par for the course I'm afraid!

(Using a gentle, unperfumed moisturiser regularly on both your face & your body will really help maintain the condition of your skin)

BONE HEALTH:-

In simple terms, steroids may & can weaken the bones, leading to lower bone density which in turn, may lead to fractures.

I requested a bone density scan (DEXA scan) before I would agree to taking a biphosphonate (medication to strengthen bones by increasing bone density) and unfortunately, the results showed I had osteoporosis and required them.

I supplement the medication by being proactive myself with my bone health in the following ways:-

-I do yoga for osteoporosis

-I eat a calcium rich diet

-I take Vit.D3 to help the absorption of calcium

-I take Vit.K2 to help direct the calcium to my bones and not my blood vessels.

-I do regular (but light) weight bearing exercises.

-I go for a daily short walk.

All these things help stave off the effects the steroids may have on my bones.

MY IMMUNE SYSTEM:-

Obviously steroids suppress the immune system so I try and make sensible choices that are relevant for me. (Others will have their own regimes that work for them too.)

So:-

-I have been vaccinated against pneumonia and shingles and have an annual flu & covid vaccination. (I obviously respect that this would not be the choice for everyone)

-I eat a healthy & nutritious diet.

-I avoid venues & events where there'll be a large volume of people in a small space.

-I always have a mask with me & wear it when I feel it's required.

-I'm vigilant with hygiene and wash my hands regularly (but not obsessively!)

MENTAL HEALTH:-

I'm quite a positive person but I've definitely had my fair share of 'down days'. When the realisation finally hits that you're in for the long haul and your life has changed, it can be a huge blow to your self worth, self belief & self esteem.

I had to take medical retirement from the job I adored and I felt I'd lost my purpose in life. I was so heavily focused on the things I couldn't do that I failed to consider all the things that I could still do!

Okay! So I can't go hiking for a whole day, but I can still go for a shorter walk in the countryside. I can't go out for dinner with friends in an evening because I'm worn out with fatigue by the end of the day. But I can go out for lunch with them! I've just had to adapt to a new mindset.

It's okay to have 'down days' but there is still always joy to be found in even the simplest of things.

Seek out help if you need it and don't try and cope alone. There is so much support and reassurance around particularly on this forum.

ACCEPTANCE:-

As soon as I accepted that my life had changed from the way it had been, and that I was going to have to adapt to this new & different 'normal' for a while, I became more settled mentally & emotionally.

Navigating my way through this transition wasn't easy because it meant making some hard decisions, learning to say 'No', and making choices I wouldn't normally make. However, it became a far less stressful experience as I began to learn more about my condition and medications and could therefore make more informed decisions. Which brings me on to my final point...

MY CHOICE!:-

I've researched PMR/GCA and steroid use as much as possible (and contine to do so) so I now feel more empowered to make the choices that are right for me! I also feel that this in turn hands more of the control to me, so if I'm in a situation where I need to self advocate, I can do so with knowledgeable and informed arguments.

These are just some of the strategies that I found helpful both in the early days after my diagnosis and currently, and hopefully will just give you an idea of some of the things you might want to consider too.

As for the steroids? Well yes they do need to be respected, but I always say that I see them as my ally and not my enemy in my fight against PMR.

They do have some side effects but most can be managed well and many prevented, and remember that you won't necessarily experience every side effect, if any!... so don't be too scared of them.

Just try and educate yourself as much as possible and you will be okay.

[PMRpro Ambassador]

Thank you!!!!

[Kendrew in reply to PMRpro]

I know I haven't covered everything and there's so much more I could have said, but I was in danger of it becoming longer than 'War & Peace'!! 😄

[PMRpro Ambassador in reply to Kendrew]

For its purpose as I see it - that doesn't matter! It's a mini-preview of the book someone wanted!

[Kendrew in reply to PMRpro]

I've PM'd you.

[DorsetLady PMRGCAuk volunteer]

Great thanks…

[yogabonnie]

What you have written is so wonderful. A good reminder to us OLD timers here on the forum. Wonderful. What a good addition to the rest of the information. Perhaps it should be pinned? or has it been. Thanks!! Sending Good thoughts always. Bonnie

[PMRpro Ambassador in reply to yogabonnie]

If you pin too many, they just get lost. It is a problem which we haven't found a solution to yet!!

[Kendrew in reply to yogabonnie]

💙 💜 🧡

[123-go]

Really uplifting post, Kendrew and full of sound, practical help for newly diagnosed as well as reminders for long timers. When I read all this I was struck by what I’ve absorbed over my ‘journey’ and just how much has become a way of life without having to work at it: it kind of became my ‘job’ to do the best for myself so I think I (and you and many others) deserve a pat on the back….not too hard though incase of bruising 😉.

[Kendrew in reply to 123-go]

🧡🧡🧡

[Claremarie83]

Well this lovely post just brightened my day!, Thankyou so much for posting this!!

[Angelsmummy]

well done you K,if I had all this info when I was first diagnosed ,would have been in a far better place.Sensible,informative and honest.,xxx💐😜

[Dorothy61]

Thank you for taking the time to write such a detailed and informative post. This is so helpful and full of practical advice and, even after 4 years of managing PMR, there are always new things to learn from others more experienced.

Thanks again, much appreciated! 💐

[Jackoh]

Well done Kendrew! Very concise and informative. 👍👍

[Ceathrua498]

Great Post. Exactly like it is for most of us. So informative and helpful. Thank you

[Polly-Anna]

Very reassuring to read as PMR is frightening to initially experience with very little knowledge to hand. This forum has been a life saver and I have more or less followed your pathway. Thank you for sharing.

[diana1998]

Brilliant...and well explained, uplifting and encouraging, especially for the newbys. There's so much to do to help oneself.

[Pollyanna16]

As others have said, well done. You must have been thinking this through for a while. It’s very positive, well researched, thoughtful & will be particularly useful to “newbies” though it’s an excellent reminder to long term patients too! Thank you.

[tempusfugi]

Thanks vm Kendrew for taking the time to write such a helpful communication about PMR. I'm two and a half years down the line but still appreciate all the info available, especially from this forum and people like you.😀

[Bonnie-ma]

thank you Kendrew. I would like to add the PMR/GCA Helpline to the list of resources. There are still a lot of people ‘out there’ who find the internet difficult and those who like to talk to human voice especially when a gp or rheumie is unavailable. It is an invaluable source of support as I have found on my own super-long journey.

[PMRpro Ambassador in reply to Bonnie-ma]

There are however a lot of things they are not allowed to discuss that we do here. Yes, I know the Helpline is invaluable for those who are in need of a person but it has some downsides.

[humlies]

Thank you so much Kendrew. I must say that over the last 4+ years my main source of practical help and encouragement has been this forum; one of the main things I have learnt is that we are all individuals and react differently, and that is OK!

At the same time I have become more aware of the advances in neuroscience and our ability to "rewire " our brains and to think positively rather than negatively. Every time I feel down, I think of one of the blessings in my life, and although this sounds a bit simplistic, I think it does work, especially if you keep at it and develop it as a habit. As does smiling and laughing when I don't feel like it!

I am now in "remission" and many thanks again to PMRpro and others who reminded me that PMR might just return - this is not negative but sensible, to be aware of what might happen without fearing it. Many thanks to all of you again.

[CocoaChanel]

What a great post! Thank you!

I would like to mention/ discuss a few points with you:

So pleased you mention K2 - Ca and D3 are often mentioned but very little said about K2.

There is hardly any mention of Omega 3 re PMR which I find surprising given all it’s benefits including anti inflammatory effects.

I have had a strange reaction since diagnosis. My mood seems to be better, even better than before I was showing any signs of illness. Just wondering if it’s the steroids or maybe psychological in that I now know what I’m dealing with and feel more in control (very important to me). Maybe also because I feel less stressed generally - don’t feel guilty about doing less, concentrating on myself, not doing the things I don’t want to do and saying no.

I keep banging on about Kate Gilbert’s book (don’t have shares, honest) but for me it was the best thing. I bought it the day after I was diagnosed and spent the next few days totally focused on digesting everything in it - as well as researching on the internet. I think it gave me something to latch onto and helped me through the initial shock and gave me hope. So although it may not be totally up to date I think it’s invaluable.

[PMRpro Ambassador in reply to CocoaChanel]

There is considerable work now available to show that Omega 3s are not the wonder panacea they have been portrayed as being. They don't affect cardiovascular outcomes and in some cases they are contraindicated - they can increase arrythmia problems. Natural dietary omega 3s do have benefits - but the bottles of supplements or added to manufactured product may not. Care must be taken with supplements of any sort but too much omega 3 can raise blood sugar, increase risk of bleeding, cause diarrhoea or reflux - all potential problems with pred itself - and if you use cod liver oil one spoonful gives you 450% of the RDA which has the potential to cause overload of vit A since it is fat soluble. stores in the body and isn't easily excreted. That can be dangerous. Just because a little of something is good does not mean that lots of it is better.

health.harvard.edu/blog/fis...

healthline.com/nutrition/fi...

[CocoaChanel in reply to PMRpro]

Surprised to hear that - I’ll look into it. In the meantime you may look at this ZOE article which conflicts somewhat

zoe.com/learn/podcast-omega...

I agree there are some things that we need to look out for like heavy metals in fish and buying only very pure fish oil ( very expensive) and not cod liver oil which as you say is combined with something you don’t want too much of.

[PMRpro Ambassador in reply to CocoaChanel]

Cod liver oil isn't combined with vit A - it is a natural source of vit A, different thing.

ZOE has started to conflict with a lot of work - and I am somewhat sceptical about some of their conclusions which seem to be more aimed at making money than is reasonable for a non-biased conclusion. Maybe I'm wrong but there are a lot of reasons people on this forum should be careful about adding too much in the way of supplements unless they are gaining the nutrients from real food.

[Kendrew in reply to CocoaChanel]

Just to add to Pro's comments on supplements.... the reason I only mentioned those few, is because all my 'research' & reading up on this has led to the same conclusion.

If you have a medical condition that causes a deficiency in something your body needs, then obviously the sensible choice would be to take that supplement. I'm not saying, don't take supplements, just don't take ones that don't serve you.

However, it's well known now that our body absorbs & metabolises its nutrition much more effectively from natural food sources in our diet, and in actual fact, most of the vast array of supplements on the market have little if no effect on our health & well-being.

Either our body doesn't or can't absorb enough of the active ingredients or there isn't really enough of it in the allowed dose to make a significant difference. (You may recall that TV's Dr. Michael Moseley & Dr. Chris Van Tulleken have both investigated this and reached the same conclusion..... eat a healthy diet and you'll get the essential nutrients in the right amounts. They also both agreed that there were only a few supplements that under normal circumstances, they would recommend. These included Vit. D, Vit.K2, & Calcium where necessary.

I must emphasise again though that we're all different and as individuals we may (or may not) require different supplements for different reasons.

I personally prefer to eat as healthy a diet as possible and not rely on supplements any more than necessary.

[herdysheep]

Helpful to all of us, not just newbies. Even after all these years I still need reminders! Thank you, Kendrew.

[Greensleeves]

Thank you so kindly for writing this piece out . Even as a long timer it’s uplifting to read some positivity , to be reminded we’re not alone and some of the basic common sense we lose in the throes of a flare . ❤️ xx

[Yorkgirl2]

Thank you. What a great post. Also thanks to everyone else on this forum for all the help and information given. It makes PMR less lonely 💕

[PMRpro Ambassador in reply to Yorkgirl2]

The mantra of the first PMRGCA forum in England, set up in the NE, in Gateshead, and what set this all off, was "You are not alone" which was the title of a support DVD which can still be seen on YouTube.

healthunlocked.com/pmrgcauk...

[Greensleeves in reply to PMRpro]

A great mantra , particularly when we learn most of our knowledge from this wonderful site .

I remember feeling very alone when it all started as I was still middle aged and certainly not classed as being within the “normal “ age group.

It’s hard enough for all of us, but this group and all of you are wonderful.

xx

[Kendrew in reply to Greensleeves]

I second that! I felt very alone too until I found this forum.

[Greensleeves in reply to Kendrew]

Well thank you for your reminder of this fantastic group and the lovely people here . xx

[Bcol]

Brilliant

[Spinnie]

Thankyou for such a positive post. I am a newbie and have been on steroids for just over three weeks. You have made me feel a bit less fearful as it can all get a bit overwhelming at times.

I am trying to do as much research and want to be as well informed as I possibly can be —finding this forum early on was a godsend. I feel that I have learnt so much already. Thanks again to all involved

[WarmVelvet]

Brilliant! Thank You. XX

[Leafsong66]

thank you for this very helpful post!

[Tiggy70]

Thank you for taking the time to write this Kendrew. Very helpful and informative. Reading it makes me realise that I need to be more focused particularly with my diet and exercise and take more control. I’m so pleased for you to have got down to 1.5 Pred. I’m just over 4 years with PMR and back up to 10mg because of a bad flare in the summer. You give me hope! 🌸

[Kendrew in reply to Tiggy70]

Hi Tiggy70,

Every so often we'll get thrown a 'curved ball' but many people do indeed taper right off steroids so hang on in there. Just be patient and restart your taper slowly and steadily when you feel the time is right. Wishing you all the best.