Recently diagnosed with PMR

[Donna5658]

Hello to the group.

I am a 72 year old woman diagnosed with PMR three weeks ago after a month of progressively worsening bilateral pain in my hip, thigh and butt muscles, as well as shoulder and neck muscles. At the end of the month, I was having difficulty getting out of bed without manually lifting my legs and the pain, aching and stiffness in my muscles was pretty incapacitating. I also had a low-grade fever and felt fluish. I have multiple sclerosis and Grave’s Disease (autoimmune hyperthyroidism) but still found myself surprised by the acquisition of yet another autoimmune disease. My CRP and Sed Rates were very high and my symptoms conformed to the diagnosis. I was put on 15 mg Prednisone and within 6 hours my symptoms were greatly reduced. By the end of the day, my pain had diminished by about 95%. It felt like a miracle. I was euphoric.

Unfortunately, my MS and thyroid disease make me a problematic candidate for the side effects of steroids, in spite of how astoundingly well they work for pain from PMR. I have thus far had significant insomnia (3 to 4 hours of sleep per night), blurry vision, intermittent headache, irritability/jitteriness during waking hours, stomach irritation, fluid retention in my lymphedema foot/ankle/leg (lymphedema from treatment for an advanced endometrial cancer) to name the most prominent. So, as I’m sure it’s been for most of us, dealing with these side effects has been a significant challenge. In addition, after having an almost complete resolution of my pain on 15 mg of prednisone for the last three weeks, I am having some increased left hip pain (lymphedema leg). Hard for me to sort out if I am under-dosed on 15mg and this is a kind of breakthrough pain or if I overdid taking a not very strenuous walk.

I have generated an embarrassingly lengthy list of questions about PMR and GCA, but will wait to ask them until I have thoroughly read the information on this site. I did buy the book by Kate Gilbert, which I am finding very helpful. However, I still find myself pretty flummoxed trying to develop a strategy for dealing with this strange new PMR world. It is very different than either of my adjustments to ms or grave’s disease.

I am very grateful that this group exists and thanks in advance for the wealth of information that is available. Health Unlocked is an amazing resource, with knowledgeable, helpful administrators and members. I feel lucky to have found it several years ago for ms and thyroid issues and now for PMR.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Side effects sounds pretty much par for the course -and yes return if symptoms are probably down to walk -unfortunately it doesn’t take much to upset things.

Maybe have a look at this link -healthunlocked.com/pmrgcauk...

..and also through the FAQs- which may give some answers, but please do ask specific questions -

healthunlocked.com/pmrgcauk...

[montebello in reply to DorsetLady]

Where are these FAQs that I keep hearing about? Thanks

[PMRpro Ambassador in reply to montebello]

There should be a link at the top of every thread but it hasn't been updated yet, However - it is in the Pinned Posts - on the right on a computer, no idea where on a phone!

But this is the link to the basic post and alphabetical divisions:

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Hi and welcome - sorry you need to come to yet another forum on HU.

To be honest, many people have exactly the same experiences at first, other a/i disorders or not. I think there is someone else on here with an MS diagnosis. The adverse effects do tend to calm down after the first couple of weeks as your body gets used to the pred. Did your GP give you other medication to go with the PMR? Some dish out PPIs (omeprazole or the like) which are supposed to help stomach problems with pred - but in fact often cause upset stomachs.

Where is the left hip pain? Outer aspect of the thigh? In the groin? I would suspect too much walking - I don't do strenuous walks, can't for all sorts of reasons at present, but walking for more than about 45 mins wakes up the trochanteric bursitis that has always been part of my PMR. And that is on the flat around the village!

If you are 90% improved with 15mg I doubt you are under-dosed, And in fact now you will soon start to reduce that dose to achieve an even lower one - the lowest that still allows the same symptom relief. That should improve the adverse effects to some extent. Just don't reduce too much at a time or too often.

[Donna5658 in reply to PMRpro]

Thanks so much for your helpful reply. The current resurgence of pain in my left hip did start as trochanteric bursitis, but now has spread to my right hip with a slightly different kind of pain, still mostly on the outer aspect of the thigh. Also my butt muscles are once again sore bilaterally. So far my upper thighs are okay. I may just need to wait this out. I am used to taking a three mile daily walk (which over the 40 years of my ms has been hugely beneficial) but it was hot the day before the renewed pain started and I was pretty worn out by the time I finished the walk.

My doctor wants to keep me on the 15mg of prednisone for another two weeks (5 weeks in all) as she said she wants my symptoms gone before I start the slow taper. She said she has seen too many patients bounce around if they aren’t pretty much symptom free before the taper begins. As much as I would like to start the taper, I also want it to work. Do most people have total reduction of pain on 15 mg before they start to taper?

My doctor didn’t give me any other meds except for something to help me sleep. Only getting 3 to 4 hours of sleep a night can cause an exacerbation of ms, so I am trying to avoid having that happen. What do other members of our community do about the insomnia that the steroids can cause?

Thanks again for your reply.

[PMRpro Ambassador in reply to Donna5658]

Butt muscles being sore is typical of piriformis syndrome - and it is part of greater trochanteric pain syndrome - new fancy name for trochanteric bursitis which encompasses a bit more which is more like reality. They can both be part of or happen alongside PMR as well as happening in their own right. I find walking exaccerbates them both unfortunately.

You seem to have a good doctor there - she obviously understands PMR pretty well. Many people do need more pred than 15mg - it is the bottom end of the recommended starting dose range: the lowest effective dose in the range 12.5 - 25mg. I got good relief on 15mg - well over 70% in under 6 hours - but it took months for some of the pain in hips, hands and feet to go altogether. But she is right - it is crucial to clear out the accumulated inflammation before trying to taper the dose or you will end up yoyoing more than is good - and it isn't necessary.

Sleep - can't really help, I have no trouble sleeping in general due to pred, other reasons like stress were my bugbear. I'd put up a new separate post asking about sleep so more people with experience will see it.

[Donna5658 in reply to PMRpro]

Thanks PRMpro. I will address future questions to the group at large but wanted to clarify my issues with bilateral butt pain. My husband is a retired PT who has treated piriformis syndrome, but feels this isn’t behaving like it. It is more of a dull achey sensation when I sit for too long. Doesn’t affect me in any other context like walking. My hips on the other hand do seem flared up, but may be diminishing a bit with time. It is still hard for me to sort out what is going on (under-dosed on 15 mg or aggravation of symptoms due to exercise).

After almost 100% improvement on the first day of 15mg of prednisone, the hips started flaring three weeks later. Is it typical for there to be this kind of fluctuation while one is on prednisone? As I mentioned, the new pain began after a walk on a hot day. My initial CRP was 67. After 3 plus weeks on prednisone, just got new result back and it is 2.47. Is this the way the CRP usually behaves after treatment is initiated?

Thanks again for all the help!

[PMRpro Ambassador in reply to Donna5658]

I have a similar pain/discomfort and for me it is definitely a low level effect of GTPS (greater trochanteric pain syndrome). It changes when it gets worse if I ignore it. improves when I do piriformis stretches and is worse after walking or standing more than I know is good for me.

Yes - you expect CRP to fall once you are on pred. It is a protein produced by the liver in response to the presence of inflammation in the body - more inflammation, more CRP produced. The pred combats the inflammation, mops it up at first and later stops it developing at all in response to the inflammatory substances produced in the early morning so less CRP is produced. It is only a marker - a very non-specific one and so also not always accurate in relation to PMR/GCA. About a fifth of patients don't have raised levels - or at least not raised out of the normal range for a large population but raised for them. In some patients it doesn't rise again in a flare if they are on pred - symptoms rule.

[Donna5658 in reply to PMRpro]

Thanks. I’ll give the piriformis stretches a try. Can’t hurt and might help.

[PMRpro Ambassador in reply to Donna5658]

Exactly! Nothing ventured and all that ...

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

This is just one post about sleep -healthunlocked.com/pmrgcauk....

But there are others -either repost as suggested by PMRpro or look at related posts from one above or search “sleep”

[Karenjaninaz in reply to Donna5658]

I got such a dramatic relief with 15mgm prednisone that I was ready to kiss the ground my doc walked on! This was after weeks, misdiagnosed by my primary doctor as fibromyalgia. My husband even needed to dress me and buckle the car seatbelt. I was so relieved that I napped during the day with that relief. I didn’t mind shorter nights if I could nap a little after lunch.

[Hidden]

Morning, you poor, poor thing. What a lot you're getting to grips with and cancer too. Just watch out that GCA does appear as then you'll need a much higher dose of Pred to combat that and hit it on the head. Makes me feel humble and grateful after reading what you're going through. Take care, we are all here for you X

[SheffieldJane]

Hello and welcome. You do have a lot of health conditions to manage. I have Graves Disease as well as PMR/GCA/LVV, it doesn’t seem to cause additional issues these days. I recognise the side effects you are experiencing from Pred. and it’s effectiveness against the inflammation. You are wise to do some reading of FAQs as a first step. I look forward to hearing more from you. This forum has been a great support over the years.

[jinasc]

I noticed you wrote " blurry vision, intermittent headache, ". Two symptoms of possible GCA.

I don't want to worry you but you need to get this checked out asap to ensure that it is just PMR and not also GCA.

[PMRpro Ambassador in reply to jinasc]

But also common side effects of pred ...

[Donna5658 in reply to jinasc]

Thanks so much for your concern. I did go to see an ophthalmologist shortly after I was diagnosed and he didn’t see any red flags thus far. He thought the blurry vision was from the prednisone. I will definitely be on the lookout for any new signs of GCA.

[Nextoneplease]

Good morning Donna5658 and welcome 😊

I’m another one with a range of health problems and I do sympathise with the difficulty of sorting out what’s what! Really glad to see you here although sorry you have yet another condition…..

Great that you’re reading through FAQs etc, but never be afraid to ask questions, people on here are very responsive.

Take care and look forward to hearing from you again xx

[Kt1943]

Hi Donna: I also have MS, diagnosed many years ago before the advent of disease modifying drugs and have been in a wheelchair for many years. I was diagnosed with GCA last November and had to immediately go on a dose of 60 mg prednisone for several weeks, so much higher dose than necessary for PMR. I have been tapering down slowly and am now at 15 mg. I have had many of the side effects you mention which come with prednisone but the ones like sleeplessness have improved over time and with the lower doses. Of course some of the side effects do add to the existing challenges that are the result of MS but I am exceedingly grateful that the prednisone has prevented me from losing my vision with the GCA. I do have blurry vision but that is the prednisone. I have noticed increased problem with swelling in my legs which is a n existing problem for me being in the wheelchair but it does seem that things do improve as we are able to reduce the dosage as time goes by. Like you I also have an additional complicated health problem, fibromuscular dysplasia in my carotid arteries, and one does wonder how it is possible to collect all these diseases!!! However, be encouraged to know that there is much help and answer to questions from the dear people on this forum who have much more experience than I do and who are very helpful in helping us deal with all this. Best of luck.

[Donna5658 in reply to Kt1943]

Sounds like you’ve had plenty to contend with. Thank you so much for telling me a bit about your experience. It really does help to compare notes and I’m incredibly grateful for all the kind and knowledgeable people on this site. It makes the whole experience much less lonely and less out of control. Good job for weathering the high dose steroids. I keep thinking they will have to put me in a medically induced coma for me to handle that dosage if I’m this bad with just 15mg.