Recently diagnosed with PMR

Hi.....I was diagnosed in July this year age 52, although I have been suffering for a lot longer 😩 I was originally put on 15mg pred and reduced to 12.5mg after 4 weeks,, this triggered a flare so doc put me back to 15mg. I am currently on day 11 of another flare where my days consist of dragging myself out of bed, showering and then being able to do nothing only sit. My doc has increased the pred to 20mg (on Monday) and referred me to a Rheumatologist, the original appointment was 22nd October but hospital rang yesterday to say they had a cancellation for this Saturday at 12!!! how lucky am I? Has anyone else not found relief with the steroids? I did originally, within a day, but now they seem to be doing nothing only giving me the side effects. Doc wonders if he was barking up the wrong tree with his diagnosis..........but what else could it be I ask?

Maybe I will find out more at my Rheumy visit.....

One of my main concerns at the moment is how do you hold down a full-time job when you can't function? I work in a nursery and I'm finding it really difficult, I've had more days off than I've worked in the last 2 months, does anyone else struggle to work? if you've had to give up work how can you cope financially....it scares me just thinking about it 🙈🙈🙈

Thanks for taking the time to read

Love Karen x

22 Replies

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  • Hi Kazza

    I like you have had time off work 3 months at present and have no other income luckily I have had full pay till now. Steroids have worked for me but struggling with side effects as regard to finances you my wish to look into claiming PIP if you have relive theirs no guarantee you will be awarded it and currently its taking about 3 months before having a medical assessment. Its worth looking into other benefits that you may be entitled to if your not sure Citizens Advice or Age UK are very helpful.

    But please rest assured your not on your own

    I like you had suffered for a while before being diagnosed 4 weeks ago The forum has many experience people on and I am sure will advice you further.

    Take Care and I hope things improve quickly

    good luck with your appointment

    Rose

  • Thanks Rose, it does help knowing others are sadly in the same boat 😟 I will keep you updated with what Rheumy says tomorrow, thanks for taking the time to reply 😄 x

  • Hi, kazza2841 - I'm going to try and copy my thread. If it doesn't work let me know. B x

    healthunlocked.com/pmrgcauk...?

  • Wow. This sounds scarily familiar. I was also diagnosed in July and started on 15 mg, with a flare when I went down to 12.5. Back at 15 mg and like you am just not able to do much at all. The steroids take away the stiffness but not all of the pain and little of the fatigue. I am 51.

    I had 4 weeks off work and am trying a phased return to work. I am incredibly lucky that I work from home and can do some work even when lying in bed. I struggle to sit for any length of time. I'm still only managing 4 or 5 hours a day and it is a big concern money wise as I cannot see how I will be able to get back to full time. I have a good employer who let's me work the hours I can and I'm still getting sick pay for the rest but I don't know how long that will last.

    None of this will be any comfort but you are not alone.

    Hope things pick up for you xx

  • Hi, thanks for replying, can I ask, when you're having a bad day is the pain or the fatigue that is worse for you? With me it's the fatigue/lethargy, completely no energy and legs like jelly that's the worst thing, I can cope with the pain, it's manageable x

  • Nothing but rest and pacing helps the fatigue - that's what the Spoon Theory is about.

  • Can I ask what is the 'spoon theory' please x

  • butyoudontlooksick.com/arti...

    An allegory about living with chronic fatigue.

  • Hi. It's the fatigue/lethargy. It's just all consuming sometimes. I had a fantastic few days last week when it was less and it was wonderful. Sadly back to more usual levels since. Can only hope that it lessens in time ☺ xx

  • Karen, the increase back to 20mg may just be what you need to get the inflammation under control if you do, in fact, have PMR. Although 15mg is the usual starting dose, there are a few patients who do need the slightly higher 20mg dose to deal with the inflammation, and this can especially apply to those who are overweight.

    As to what you may be suffering from in the case that it isn't PMR, there are a whole host of other conditions that can cause pain similar to that of PMR, and because there is no definitive test to confirm PMR, it is usually diagnosed after excluding the possibility of other inflammatory illnesses, including rheumatoid arthritis. Vit D deficiency, hormone deficiency, fibromyalgia etc can also result in pain in similar areas to those of PMR. So, if no other tests have been carried out then hopefully your rheumy will investigate further tomorrow - and yes, how lucky are you to get such a fast appointment.

    As for holding down a full-time job when suffering from PMR, I could never have managed that in my early days of diagnosis and I remain in awe of those who do manage to do so. Most people we come across do find they need to take a period off work until the steroids do their job of controlling the inflammation following which they return to work on a part-time basis at first, gradually building their hours up again as their symptoms allow. Rose has given you good advice as to who to contact for help and support.

    I hope all goes well for you tomorrow and your rheumy is able to get a handle on things. If it is PMR, then do look up the PMRGCAuk website for lots of information, including a book available 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', by Kate Gilbert, available direct from PMRGCAuk pmrgcauk.com, also on Amazon, with all royalties from sales being donated to the Charity. On the website you will also find links to support groups dotted across the country - there might just be one in your area. I do hope you soon start to feel better.

  • Thank you for taking the time to reply 😄 I bought the Kate Gilbert book from Amazon and it is definitely worth reading, I also joined a closed group on Facebook and learned a lot. What I can't get my head round is every time I look up PMR on Internet the symptoms never really read as much as I am actually suffering, all the sites seem to make light of it ( if that's the right thing to say) you know they don't really describe how bad it can actually be. So it good to hear from actual people in the same boat, also I've been surprised at the age of a lot of suffers, it says it's an older persons condition, but this isn't true, there are loads of people in their 40's & 50's. Thank you for listening to my moans lol x

  • You may need a bit more to get the inflammation under control to start with - especially if you are still working at a very physical job. I worked for 5 years with untreated PMR - but I was freelance and all I had to do was get from the bed to the computer. I lived in a house with loos on every floor - but when I moved to a house with bathroom upstairs, kitchen downstairs the PMR went into orbit! I managed to get to our flat in Italy - lift to the 2nd floor and all on one level and was back to managing. Constant pain, but I could function. No way could I have done your job and I was only in my early 50s.

    There is a wide range of things it could be causing the PMR symptoms and the GP should have checked most of them first. But if you got a good result from the original 15mg that does sound helpful - but you then did the typical thing: you went back to normal levels of activity and that simply doesn't work. Then you reduced the dose as well.

    Read this - and think about it

    butyoudontlooksick.com/arti...

  • Take the time out and read these three websites:

    pmrgcauk.com

    pmr-gca-northeast.co.uk

    pmrgcauk-nw.com

    The new international guidelines on the Treatment and Diagnosis of PMR are due to be issued by the British Society of Rheumatologists shortly. The age range has been lowered to 50 after Patients Representatives with actual experience of PMR finally got the point across. Although we do know of people younger than 50.

  • I was 52 when first diagnosed, 3.5 years ago and have had a very up and down time with multiple flares and still on 12mgs Pred. at he moment. I have learnt the hard way that the PMR is pretty much in control and I can't make it go away or behave itself!! All I can do is accept that I have it and that it is still very active and that I need to take whatever level of Pred. is optimum. Having said that, I am nearly always in some pain and also have variable fatigue. Initially, I couldn't sleep at all and Amitriptyline has helped with both my pain and the sleep.

    Work wise, I was working flat out initially as my husband was made redundant,but about 18 months in I had to accept that work was making it all much worse. I cut my work by about 30% which was hard as I am self-employed, but my health did improve. I have very slowly increased my work to about 50% of what I was previously doing and I have to be very careful and say "no" quite a lot! I have found that I can flare with any increased stress, pain or physical activity.

    I hope you have a good experience with the Rheumy- I am on my 4th Rheumy- they don't all know about the details of PMR especially us younger ones!!

  • Hi -

    I was diagnosed in June with PMR/GCA and was put on 40mgs, now down to 20mgs - I was put down to 17.5 because of steroid trembles and palpations, and having all the side effects - but pain returned so back to 20mg. Working full time as a Manager at a busy vet Practice, and although work have tried to accommodate my illness, my actual work demands my attention - and I am not as sharp or even interested as I should be. I have not taken any sick time off and am often exhausted and crash all weekend.

    I have just had PIP declined, so although we already live in a tiny house, we are selling and try to find something even smaller or a different area to become mortgage free, I cannot image continuing working at this level and so far I am still just as tired as I was before I was diagnosed, actually more so. From 1pm I am pretty useless to be honest.

    So anyone working with this I believe will struggle, but there is little choice while it is still not recognised as the illness that it is .... its strange, individual in many ways, but completely life changing in the early stages.... I have no idea how it is yet in the latter ones. There appears to be little if any financial support available.

    I wish you well, hopefully with only the PMR you may reduce a little quicker.

  • Hi

    Are you appealing the PIP decision ?

    Most applications are turned down but are awarded on appeal

    The trick is on how you complete the form

    Best to keep a diary for a week before completing the application and send in with application .Also send as much information in as possible one of the questions is how far can you walk ,you may be able to walk the distance but how does it effect you doing it ,Are you breathless or in pain does it take a long time do you have to stop and rest are you fatigued after or the next day .

    PIP states its a disability benefit for those suffering a long term health condition which is likely to last more than nine months and has a significant ability on you day to day living, well I think we all agree PMR does this.

    If you appeal ask your GP for a copy of any evidence they may have sent also a copy of the assessors notes as this does not always reflect what was said at assessment .Assessors are health care professional could be midwife ,nurse, physiotherapist and may not have any knowledge of PMR.

    It also pays to inform your GP you are making the application and discuses the areas you need help in so his information matches yours when they request the medical information from him .

    I don't drive and need to us Public Transport my GP was happy to support my application for a disabled bus Pass .

    Sorry if you are aware of all the above information but I know too well what a nightmare PIP is

    Rose

  • I am a 52 yr old female from New York and I was diagnosed with PMR in July 2016 after being put on low-dose prednisone for knee surgery from a fall. I truly believe that the Cortizone injections and then topping it off with low-dose prednisone caused my PMR a.k.a. adrenal suppression. This disorder PMR is quite new. 1969. I don't think it's coincidental that steroids were introduced just a few years prior. I finally got off the steroids in September. I flat out said to my rheumatologist that the prednisone was literally killing me. It initially felt good but that didn't last long. I was sooo sick. Felt like I had the flu. I insisted on getting a bone density test which revealed bone loss. I also lost some hair and grew hair on the side of my face which thankfully went away after getting off meds in Sept (regardless of pain) I take prescription strength ibuprofen, and many supplements. The only thing that has given me relief is acupuncture. My acupuncturist who is an M.D. osteopath said under no uncertain terms to go back on prednisone. He said the reason why I have so much pain in my muscles and joints is because I am not producing my own steroids which were suppressed by prednisone. We are working on getting my adrenals working again. Chinese herbs, weekly acupressure massage, hot Epson salt bath with The Essential oil Hylchrysium. What was really interesting is my rheumatologist knew I had Hashimoto's thyroiditis and when I asked if there was any interaction with prednisone he said no. My endo said my blood levels were normal too but I was on prednisone at the time. My osteopath/acupuncturist suggested I increase Synthroid 35 mgs. Turns out he was right, prednisones had suppressed my thyroid. Most of the lethargy has dissipated and some of the muscle pain. I pray to God I don't resort to steroids because there are some days that I just want to give up and take them but I remind myself of the serious life threatening side effects. I've lasted 2 months on no steroids but it's been tough. Is anyone out there going without steroids ?

  • Are you saying the prednisones caused your polymyalgia rheumatica and that that is the same as adrenal suppression?

  • Prednisone is used to treat polymyalgia rheumatica. Because one is on the medication for a long time it suppresses the adrenal glands' ability to make cortisol. For most patients the adrenals begin to function again when the dose goes below about 7 or 8, and may take up to a year to be completely back to normal after discontinuing pred altogether before everything is in balance again. I have NEVER heard of prednisone CAUSING PMR. If you were given cortisone for another reason and you developed PMR it was probably entirely coincidental.

    As for it being a "new" disease, it may have been described only about 50 years ago, but it definitely existed before that time. Many of the auto immune diseases have been distinguished from one another over the past number of years, and it is recognized that treatment protocols vary from one condition to another. At the present time there is only one readily available medication for PMR and that, unfortunately, is the glucocorticoids like prednisone.

  • I believe in my case being shot up 5 times with cortisone in my knee in a few month period and then "topped off" as my Rheumy said with prednisone to get my still swollen knee down did me in. my body just couldn't handle that amount of steroids. I developed what the dr said was PMR after 2 months on prednisone. Every time I try to get off I had debilitating pain in my hips shoulders and neck which I didn't have before taking this medication. I only had a swollen knee from the surgery for a torn meniscus. Each day since getting off meds I see a slight improvement but it's really slow. Some days are worse than others. I switch between ibuprofen and Tylenol. My osteopath is certain it's adrenal insufficiency due to the use of steroids. If you look at the side effects of prednisone they mimic PMR. I guess time will tell if I truly have PMR Ive got a long painful road ahead of me, if not my osteopath is certain that I should recover between 1 to 3 months. I will keep you all posted. Please understand this is my personal experience. I am not advising anyone to not take the medication. I personally cannot tolerate steroids which I found out the hard way. I think the most difficult part has been mentally dealing with this all because your life is completely turned upside down. I'm glad I found this support group. I just wish it wasn't halfway around the world! Sending strength and compassion to you all.

  • Steroid withdrawal pain can resemble the pain of polymyalgia - one reason it is so difficult for us PMR patients to reduce our dosage and have to do it extremely slowly. I can't understand why doctors would have put you on steroid treatment for your swollen knee long enough for you to have developed adrenal insufficiency. Usually a couple of weeks on a steroid will not cause that serious side effect. It sounds like you weren't given a chance to wean off more slowly to give your adrenals a chance to wake up and start producing their natural cortisol again. I'm sorry you have to go through this period of pain. Believe me, anyone who's had PMR understands what it must feel like for you! I do hope that after all this at least your knee is well and truly on the mend!

  • Thank you Heron. Knee is well thank god! Dr initially put me on prednisone for one month with a 20 mg wean. When I got down to 5mg I wasn't feeling well so he brought me back up to 20mg to wean again but much slower. I couldn't function. Light headed , blurred vision, no appetite ect. I lost 15 lbs. that's when I stopped 1 week 10mg, 1 week 5, then stop. I was told I would be in pain for a couple months, I just realize how much. On a good note, I am grateful because I have now found empathy for adults and especially children that suffer from chronic pain.

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