Newly Diagnosed

[SurfMurf]

Phone call from Doctor while on holiday to say blood tests show Pmr and wants me to start on steroids immediately I get back. Very reluctant to go on steroids, are there any other treatments?

[PMRCanada]

Welcome to the forum SurfMurf. You are at the very early stages, and like you, when I was first diagnosed I was so afraid of prednisone (the only treatment out there for PMR). I very reluctantly started pred May 1st, but did have about 75% improvement within the first 24 hours which helped confirm the PMR diagnosis (blood markers aren't always accurate). I have adjusted my diet to avoid some of the side affects of pred (ie: weight gain, diabetes, etc), and have actually lost weight (which is helpful for my knees that have OA and are chronically injured).

Beyond the physical, a PMR diagnosis can put one into a state of panic, and often folks feel a range of emotions such as shock, anger, loss, confusion, etc. Once I came to terms that I had a (non-fatal) auto-immune condition, and accepted that, I was able to better adapt to my "new normal". I often remind myself that this is temporary, albeit likely to play out over years instead of months. I gave up trying to control the PMR, and instead focused on things I could control that would aid me in my healing process, such as what I eat, when I rest. what activities I participate in and whom I share my diagnosis (and woes) with.

Stick with this forum......it is invaluable! The collective wisdom of all of these folks who have a lived experience with PMR/GCA is remarkable. We support one another and celebrate the accomplishments along the way. A sense of humour helps too. You are not alone, we are here for you, and if you are fortunate enough to reside in the U.K., there are a number of face-to-face meetings you can participate in.

Others will be along shortly to share their expertise and experience offering words of wisdom and support. Let us know how you make out.

[SurfMurf in reply to PMRCanada]

Thank you so much for your kind words and support! I am also a carer for my husband who has Leukaemia so the thought of being ill/incapacitated horrifies me. I will follow your advice and hopefully report back positively.

[Cyclegirl54]

Hello SurfMurf

Sorry that you’ve had the PMR diagnosis. This forum is a great source of information and support so please ask any questions . I’ve had PMR since Jan 18 and on Prednisolone .

Look after yourself. Best wishes from a very windy Dorset .🌸

[SurfMurf in reply to Cyclegirl54]

Thank you so much Cyclegirl54, how are you doing on the Prednisolone? I really dread going on it, from a very wet Majorca 😔

[Cyclegirl54 in reply to SurfMurf]

Hi SurfMurf,

I started off in March on 10 mg ( not enough)which then went to 15 mg (still not enough!)and finally in June got some respite at 20 mg! I am now on a dead slow reduction and have reached 18.5 mg. Yay!

I’ve learnt it’s not one size fits all for Prednisolone- everyone’s different. And it is the medication for PMR/GCA. There are some very knowledgeable people on this forum who will give you very sound advice - I’m sure they will be along soon.

Hope the sun shines soon!

🌸

[Theziggy in reply to Cyclegirl54]

Did you agree the dead-slow reduction with your GP or Rheumy first?

[Cyclegirl54 in reply to Theziggy]

I had a chat with doc first.

[Theziggy in reply to Cyclegirl54]

👍

[Pongo13]

I felt suicidal with PMR at its worst - it was a long time being diagnosed. Steroids saved my life! Embrace the steroids! Get your life back! Scary yes, but one benefit is you have the wisdom from this forum (although I'm not a wise one, just a drama queen).

[SurfMurf in reply to Pongo13]

Thank you!

[Wraysbury]

Welcome. Although I’m sure you’re rather not be here. I’m relatively new, been on steroids 5 wks and as many have said, I felt just the same as u. However the pain was unbearable and then it was 70% better overnight. Read as much as u can once u get over the initial shock. I’m just coming to terms with it all now. So pls give yourself time. Good luck.

[SurfMurf in reply to Wraysbury]

Thank you and good luck to you to!

[MhairiP]

Hello SurfMurf - sorry you've had to join this exclusive club against your will! I think everyone goes through similar emotions when they're first diagnosed, especially being reluctant to take steroids. When I was first diagnosed (2 months ago) I searched frantically for an alternative, but there's nothing - certainly nothing that relieves the pain so effectively.

The steroids are not as bad as I thought they'd be, and for me they have been very effective. I no longer suffer from fatigue or pain, and i haven't put on any weight (if anything, I've lost weight). I have altered my diet to reduce carbs (I never did eat much in the way of sugary or processed foods, so no change there!). My only issue now is fuzzy-headedness/lack of concentration - but whether that's due to PMR, pred or just my age, I don't know!

There's lots of knowledge and expertise on this forum, so don't be afraid to ask, even if the question seems quite trivial!

I hope you are still able to enjoy your holiday. x

[SurfMurf in reply to MhairiP]

Thank you MhairiP I’m adjusting to being slow but at least for now I’m in the sun! X

[CT-5012]

Hi and welcome to the club that none of us wanted to join but well here we are. I have both PMR and GCA diagnosed two and a half years ago. You will reluctantly come to realise that Pred is your best friend. The list of side effects is daunting but we don’t get all of them and those we do get can be managed. Lots of experience and knowledge on this forum, don’t be afraid to ask anything, no such thing as a silly question. Lots of sympathy when you need it, we know how you feel. We also have a few laughs along the way. 😂 All good wishes.

[SurfMurf in reply to CT-5012]

Thank you. All this support is making me feel better already!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

To be perfectly honest, steroids are the only the tried and tested answer to PMR or GCA.

Like most drugs they do have side effects, but all vpcan be managed and most recede as you get to lower doses.

The alternative - living in constant pain and the chance of escalation to GCA - a lose, lose situation.

Have a look at attached, it might help a little, realistic without being too scary, and might give you some things to discuss with GP.

healthunlocked.com/pmrgcauk...

[SurfMurf in reply to DorsetLady]

Thank you that was really informative and I will print it out to show to my husband. Now I know why I wake up at 4 am in pain!

[PMRpro Ambassador]

Short answer - no, afraid not. You can help with lifestyle adaptations but nothing replaces pred for relief of pain and stiffness.

Pred really isn't that bad for the vast majority of people, especially at PMR doses. While you start at a moderately high dose of 20mg usually, often 15mg, you will reduce that dose to the lowest that works as well as the starting dose did. The secret there is SLOWLY.

There is lots of help here - just ask. Once you feel the pain relief you will start to feel that pred could well be your friend - which is just as well really.

[piglette]

I am amazed you could actually go on holiday with PMR, I could hardly get out of bed!

[PMRpro Ambassador in reply to piglette]

I managed for a long time - but I was never totally bed bound - even if it was hard to get out of it!

[SurfMurf in reply to piglette]

I’ve been in pain now for about 6 weeks especially in bed but have carried on working. Doctors weren’t sure what was wrong, however, 2 different blood tests showed increased inflammation levels. If I could go to work I wasn’t giving up my holiday! I think the warmth and sun, when it shines, have helped!

[Grants148]

Hello SurfMurf,l am sorry that you have PMR,l did not like the idea of having to take steroids but as has been said already ,prednisolone is the best treatment for reducing the inflammation and usually works very quickly. I found that any side effects were much easier to cope with than PMR itself .Best wishes as you start your PMR / Pred.,journey,please keep in touch,l have found this friendly and informative forum so helpful and l am sure that you will too.

[SurfMurf in reply to Grants148]

Thanks for your kind words

[pmrkitty]

Hello SurfMurf, so sorry about your diagnosis but you have found the perfect forum for help and support. When you have those days when nobody understands how you feel, log on and start typing. There is nothing that will surprise any of us and there will always be somebody who totally understands what your feeling or going through. This is just a blip in your life and once you have gotten to your right level of prednisone it will get better. There are side effects but prednisone does reduce your pain level. So, enough said, welcome to our world.

[PMRpro Ambassador in reply to pmrkitty]

"There is nothing that will surprise any of us ..." - oh I don't know, some things said and done by doctors can be a bit surprising...