PMR New member

[Penny9]

Hello, I'm new here. Recently diagnosed with what is strongly believed to be PMR by my gp. Read a bit of info about it and it's treatment. Been on 15mg for about 4 weeks. Slight improvement but not fully yet. I had been struggling with my job but hoping this will get better and won't interfere with living normal life again. Looking for the positives really, and advice and information to keep in control.

[DorsetLady PMRGCAuk volunteer]

Hi. And welcome.

This link might give you some insight -

healthunlocked.com/pmrgcauk...

- and sure others who still work with be along in due course with help in that aspect -it’s not easy but your employers need to take account of your illness and assist as much as possible - have a squint at this as well -

citizensadvice.org.uk/work/...

Maybe also have a look at FAQs-but always ask if something specific is worrying you -,

healthunlocked.com/pmrgcauk...

[Penny9 in reply to DorsetLady]

Thank you so much Dorset Lady. I look forward to reading the info in the links.

[DorsetLady PMRGCAuk volunteer in reply to Penny9]

Please do, see you have a very demanding occupation, so please make sure your LM is fully aware of your illness.Take care, and as I said, any questions, any time- there’s always someone around.,

[123-go]

Hi Penny9.I'm sorry to say that I have to put forward what you may consider negatives 😏. Firstly, to have only slight improvement in symptoms after 4 weeks on 15mg of Prednisolone suggests that you aren't on a high enough dose to manage the inflammation in your body and this needs to be addressed by your doctor. Secondly, rest is very important and working may very well inhibit this. If you have to work it's important to do as DorsetLady has advised and ask your employer if she/he will help in reducing your workload; I do understand that your job is very likely stressful and that in itself impedes progress in PMR. Finally, pain or discomfort and a racing mind after a day's work will have an impact on your sleep pattern but hopefully these effects can be lessened if you speak to both your employer or first-line manager and your doctor (-regarding pred).

Following an anti-inflammatory diet is important but it won't ever replace the need for steroids.

I hope all this hasn't made you feel dejected. Once you get a handle on things you can do to improve things and work on that you will hopefully feel more positive. 🙂

I meant to add my sympathies for your loss. 💐

[Penny9 in reply to 123-go]

Thank you 123-go. I sold my house to get rid of my mortgage 6 yrs ago and I went part time about 4yrs ago as I was finding it really hard mentally as well as physically even then to cope and was worried incase i got the sack. On the plus side, I was able to take care of my mum at home till she passed, for which I am grateful for. I rent now and live cheaply. When im not at work, i spent most of my time resting, sleeping, I have lost motivation to do anything, seeing friends, going out for walks etc. I cried when I learned that I have a condition to blame and its not I'm my mind or due to depression. It was a relief. My gp has signed me off for a month while I get adjusted to meds and to rest from stress. I'm not sure how it will work out with work. Social care is dealing with clients and dead lines etc. My manager is pretty good. Might have to spread my hours over the week. I will discuss with my gp when she phones me after the next tests next week. I'm not free from pain, it's there constantly. I'm not as stiff though. It's a new journey but now I have an idea of which direction I'm going, thanks for your advice .

[123-go in reply to Penny9]

I can understand your relief when you were diagnosed. Before mine the pain gradually moved from my shoulders to upper arms, thighs, knees.....I wondered what on earth was happening to me. After I began taking Prednisolone I could get out of bed on my own for the first time in four months. Please ask your GP to prescribe a few mgs more of Pred as you don't appear to be taking enough to get on top of the inflammation. None of us wants to take medication but quite honestly, Pred is your 'friend'. When there is at least 70% improvement in your symptoms you can think about reducing but nothing should be rushed.

There is a wealth of knowledge and information here and I see you have been given some links to read. It's a lot to take in at the beginning but the more you know the more equipped you will be to cope.I wish you all the very best as you go forward. 🙂

[Bcol]

Hi Penny and welcome to the forum. Excellent advice already from DL and 123 and do bear in mind that this is a long term systemic illness that won't just go away. However, as Autoimmune illnesses, if you are going to have one this isn't a bad one to have. We have members and users of the forum across the continents so there is nearly always someone around to listen, advise and help if they can. No question is too silly to ask and if you are like the rest of us you will probably have many as the days go by. Take care.

[Penny9 in reply to Bcol]

Thankyou Bcol. Its really comforting to know sites like these are here and support is available. Yes, it could have been worse as auto immune conditions go. I always try to making a negative thought into a positive one. Probably why I've coped up till now. I dare say, a question in the middle of the night when I can't sleep and some random question pops up about this condition will appear now and again.

[piglette]

Hi Penny. I am so sorry you have been diagnosed with PMR. Remember PMR is life changing so adjust what you do. PMR always wins if you overdo things.

[Penny9 in reply to piglette]

I think it's educating people around me. They don't understand I have legitimate limitations for a reason. I didn't understand either before diagnoses. Everyone thought I was prone to being antisocial and miserable. I had to push myself to prove I really am not. I just need to adapt and adjust.

[piglette in reply to Penny9]

This is always a problem. People complain about this problem doesn’t matter what illness they have. I suppose it is difficult to have empathy when it has not happened to you. Also I have found people prefer to talk about their own illnesses rather than listening to my illness!

[HeronNS in reply to Penny9]

As my friends were gradually learning I was ill I found myself invariably following up the word "polymyalgia" with "it's not the same thing as fibromyalgia"! Now I think everyone who matters has long known I have PMR, but if on a rare occasion this comes up people still assume they know what it is: fibromyalgia 🙄🤣 And, yes, friends, and some family, need to be told that in terms of your energy level and ability to participate socially or otherwise, you are not the same as you were a year or so ago.

[PMRpro Ambassador]

To me that is red flag - if it is PMR the doctor should be looking for a 70% global improvement in symptoms quickly - not a month. That does require you are on a high enough dose of pred so the first action would be to raise the dose to 20 or even 25 if that doesn't work, in accordance with the 2015 Recommendations for the management of PMR:

rheumatology.org/Portals/0/...

If that doesn't achieve the desired result - it must be seriously considered this isn't PMR at all but a polymyalgic presentation of an inflammatory arthritis. I'm assuming your GP has done the other rule-outs for cancers etc?

[Penny9 in reply to PMRpro]

Thank you. PMRpro. I will mention this with myGP. I had mentioned my worries of cancer when I first challenged that there was something not right so I am presuming that all the blood they took, was tested for signs. Low bit D was found and I was put on a strong dose for 6 weeks. I didn't feel any different but my liver reading was better apparently. I will discuss with her on my next appointment and ask if I should see a rheumatologist.

[PMRpro Ambassador in reply to Penny9]

Not unreasonable if the criterion is response to 15mg - and you haven't really have you?

[Penny9 in reply to PMRpro]

I'm going to phone the gp tomorrow morning instead of waiting for my blood test appointment next week. I'm laid in bed trying to sleep and my body feels like it's on fire. I thought it had calmed down a little after a few days of starting on Pred so was feeling optimistic but I've notice a gradual increase in discomfort and tonight the pain is almost back to where it was before I started on meds. I'm still not as stiff in the mornings for as long, but I swear it feels like painful spasm where I twitch involuntary. That has been going on for sometime. I don't know if it's normal or not. Thank you for the link. The chart was useful.

[MiloCollie]

Best of luck penny9. I was lucky enough to be able to stop work. I was a nurse. Go with the advice from the experts on here. Get your pred increased and rest rest rest. When you feel better still rest. Get your hours changed at work if you can and learn to ignore dust 😂

[Penny9 in reply to MiloCollie]

Thank you. I think I badly underestimated how living and managing this condition was going to be. After reading about pmr treatment in general on the Web, it lead me believe that in a few days, it will be resolved or at least vastly improve and 'zing' back to normal although not cured. Maybe the GPS are reading the same articles. Reading all the messages on here is really insightful. It appears that 15mg pred is a fairly low starting point so will ask for increase to see how that goes. Tried to get to speak to gp or even leave a message this morning. 38th in telephone queue. Never known anything like it. I will just have to wait till next weeks test and phone call. I've lived this long with it, a little longer won't harm. My job isnt what I call physical however I sit and type a lot. At the end of the day, the agony is horrendous. I do stop and start frequently and try to sit correctly etc. Up till this minute, I never associated the pain in my shoulders and neck could be attributed to pmr. I have 7 yrs to go before retirement. Hopefully increase in meds and chat with our Occ health and manager will help.

[PMRpro Ambassador in reply to Penny9]

My daughter works in A&E, she said yesterday she is fed up hearing patients saying "I can't get to see the GP" And by the time many get to A&E, they need hospital treament - which, had the GP done their part in the first place, probably could have been avoided.

[Nextoneplease]

Hi Penny9 😊

Just wanted to welcome you to the forum. I was diagnosed (finally!) in March 2021, so coming up to a year now. I too was put on 15mg and it took a good three weeks to have any discernible effect. I had no knowledge then, but looking back I’d say I should have been put on a higher dose much more quickly (I was put on 40mg when GCA was suspected a couple of months later). I also underestimated the generally debilitating effect of PMR. Don’t get me wrong, it’s much better than it was before I was on pred….but I had no idea I was in for a relatively long haul.

Anyway good luck with Occ Health and your manager, and there’s loads of support on here. The forum is brilliant 😊xx