Newly diagnosed with PMR

[Patricia157]

I have just been diagnosed with PMR after a good number of months of increasing pain and discomfort. Not knowing what is causing the symptoms can be a minefield. Is it tendonitis, frozen shoulders, sitting in the wrong chair or spinal problems. One tries to think of anything to resolve the problem. Initially my doctor said tendonitis as it was only in one arm so sent me to a chiropractor. Tried hot and cold treatment, exercises etc. That did nothing for me. My saving grace came when one of my neighbours, a retired nursing sister who it turned out had had this condition herself, suggested it might be PMR as by this time the pain had moved to the other arm as well.

I saw my doctor the following day and asked if there was any chance that it could be PMR. Unlikely, he said, but he would arrange a blood test and so on January 2 nd I had it confirmed positive. My doctor acted very quickly and I am now on 15 mg of Pred. What a difference it has made to my life already but I realise that it is only the beginning of a new journey in my life. The thought of steroids was one I rather dreaded but I feel much more positive about it since I discovered this website. Many of my fears and doubts have been answered. My doctor would certainly not have had the time to spend on all the questions that I needed to know in these early stages.

I have now subscribed to PMRGCA UK and sent off for Kate Gilbert's book so await some more helpful information from these to help me manage this condition. I will now be looking into how I manage my diet and exercise but I have already learned much from reading the letters and answers in Health unlocked.

A Happy New Year and may 2015 be a healthier one for you all.

[DorsetLady PMRGCAuk volunteer]

Patricia157,

Hello and welcome to the club!

Diagnosed with GCA/PMR almost 3 years ago, and have had a pretty torrid time, but am now on my fifth week on holiday in NZ with my daughter and her family.

Am down to 6mg (from a mighty high of 80mg!) and feel good, really good, despite being worried about the journey out. Not really looking forward to the return journey next week from the sunshine back to UK winter. But have my next goal in mind, down to 5mg a day, and already thinking about my next trip out here!!

Take my progress as proof that there is light at the end of the tunnel. Good luck to you on the journey, and make the most of this website, and keep in touch, it's great for all of us to know how others are progressing. DorsetLady

[Patricia157 in reply to DorsetLady]

Thank you for your good wishes and incredibly quick reply. It was five o'clock in the morning here when I wrote this but I got up not because of any pain but because my husband has been coughing quite a bit and I realised I was not going to get much sleep until he did. I hope you enjoy the rest of your holiday and that your return journey goes well. The weather here is a bit changeable but that's normal!

[Angela123]

Good morning Patricia and welcome to the site. You sound positive and in control as you should be and are doing all the right things. I have just passed the 12 months mark since diagnosis and am at 5mgs. You will find a lot of information in Kate's book. Many of us have found it invaluable. I have it on my Kindle. Good luck with your PMR journey and if you have any queries or concerns you will always find someone here who has help and advice for you. Best wishes, Angela.

[Patricia157 in reply to Angela123]

To Angela123

Thank you for your reply and for your suggestion to also put it on the Kindle.

Best wishes

Patricia157

[olive2709]

So glad you are getting Kate's book I have GCA

.One thing I would suggest is mark pages in the book for family and friends to read so they can get understanding.My book sits beside my coffee machine and I point everyone to it when they have questions. Hubby tell me making him read about my condition has been his saving grace welcome Olive

[jane054]

I am going back to GP today after a series of blood tests and two of them had very high inflamatory markers. He had suggested at my last visit that it could be PMR but doing 2 more blood tests for RI, I decribed my pains as widespread and ive been like this for a few years but just get on with my busy life and it comes and go s. But this last bout has been persistant and pain in my left shoulder neck and arm is constant with mild ache in the other arm.

He did explain that steroids would make a huge difference but I am very worried about taking them and was so interested to hear your story... could you please elaborate on the 15mg pred..what side effects are you experiencing and have you gained weight (that is my biggest concern)

thank you

[olive2709 in reply to jane054]

I have GCA so my dose of pred started very much higher then yours will ie 40mg daily down to 22·5mg daily I put 7lbs on in first 4 weeks that was end September did not get on scales again till this week still only 7lbs gain so pleased with that. PLEASE put your health first the relief pred gives is dramatic just you wait and see

[Patricia157 in reply to jane054]

To Jane 054

I have only been on the Pred for less than a week so it is too early for me to say much about the pills. I would say that prior to starting them I was really suffering and needed quite a lot of help with dressing etc. Since I have been on them I am sleeping much better and the pain and stiffness associated with PMR has greatly subsided.

I don't think there is any alternative but I found reading others experience here has helped me understand this condition. I am already trying not to eat between meals, eat much more sensibly, and drink water or the occasional coffee and tea. I am pleased in a way that the festive season is over and that temptation is out of the way. My concern like you is weight gain so any help in that direction would be very welcome.

I haven't seen my doctor face to face yet since the result was confirmed so I don't know what his plans for the management of the Pred is as yet.

[Annodomini]

Jane054, please don't be scared of steroids. Early response to a 15 - 20mg dose is a diagnostic tool for PMR. In my case, it happened in 24 hours and I can't recall any damaging side effects, except for tendonitis for which exercises were the answer. Admittedly, there have been a few setbacks but nothing I couldn't handle. Take my word for it, if you do have PMR, you will feel much better with prednisolone than without it.

[Celtic PMRGCAuk volunteer]

Patricia, you've already received a big friendly welcome from our forum friends here, so here's another little welcome to the 'club' from me. Your post is very positive- sounding for someone so recently diagnosed, so well done - such positivity will, I'm sure, stand you in good stead as you continue to improve.

Go easy with the exercise in these early days - you can benefit from a daily walk but the gym, for instance, may just be a step too far whilst the steroids are getting control over the inflammation. Diet-wise, reducing refined carbs can help to offset any steroid weight gain. Also avoid as many processed foods as possible, and reduce sugar intake to help avoid the risk of steroid-induced diabetes. Including lots of anti-inflammatory foods can help - oily fish, beetroot, avocado, garlic, turmeric etc.

Good luck and do keep in touch - there is always someone around to offer helpful advice from their experiences, or even just a chat!

[Patricia157 in reply to Celtic]

Thank you for the very friendly welcome I have received from you and others so quickly. I have taken on board your suggestions on diet and exercise.

Many thanks

Patricia157

[PMRpro Ambassador]

You won't be on 15mg forever - that is just to wipe up all the inflammation that is present. Then you reduce VERY SLOWLY to find the longer term dose that manages the symptoms. I emphasise the VERY SLOWLY!

Pred gives you a life again, whatever its downsides, and there is no other option as yet. The rest of the management is up to you - rest and pacing are both important. As is not overdoing it just because you feel so much better!

Remember that your body isn't tolerant of exercise, won't tell you you've done enough for now and will take longer to recover. You will hit brick walls at times - just rest and recover, and remember how much you had done to get to that stage: don't do it again!

[balamuti]

Hi there,how did the doctor diagnose you with one blood test?

[PMRpro Ambassador in reply to balamuti]

This is a VERY old thread, from 4 years ago.

There is no blood test specifically for PMR - they probably did an ESR and it was high which added to their clinical suspicions.