Acceptance

[Mmjj]

Strange I was diagnosed with PMR last aug and have steadily tapered on prednisone to 5mg, the last 4 wks my body to struggling to cope I’m working as hard as I was pre PMR and think it’s all suddenly dawned on me my life has to change.Acceptance is so hard, I almost feel I’m grieving for the person I use to be 😢

[piglette]

When you go into remission you will become the person you used to be although a little older. An awful lot of chronic illnesses do not go into remission so we are lucky.

[PMRpro Ambassador]

You ARE grieving what is lost - and it may be that bereavement counselling might be helpful for you.

But it may just be that at 5mg your adrenal glands are struggling to keep up with the changing dose. Just mark time for a bit and see if you catch up - after only 9 or 10 months you may find it doesn't take too long.

[Mmjj in reply to PMRpro]

Hadn’t thought about my adrenal glands! Thankyou you keep this in mind and push through

[tangocharlie]

As well as acceptance it important to learn how to pace yourself, but no doctor tells you that, you learn the hard way when you get wiped out. Also you haven't even been on steroids for a year yet and are down to 5mg so you may actually be at a bit lower level than your body needs at the moment. There are many different possible steroid treatment plans but one mentioned on here sometimes, by Quick and Kirwen keeps patients on 10mg for a year and claims to have more success at avoiding flares and relapses than the generic tapers most GPs put people on. Interesting you are about the age I was when first diagnosed (51) which is considered very young. I started on 10 mg of Pred (lower than the now standard 15) and was down to 5 within about 6 months, and with hindsight I think that was wrong as I was in agony all the time but knew no better, I just trusted the doctors knew what they were doing so tried to keep calm and carry on. I was trying to work and really struggling as I was fatigued and in pain, not to mention the steroid side-effects of things like insomnia and weight gain. I'm sure all that set me back as my inflammation wasn't being adequately controlled and so was taking its toll on my body.

Worth discussing how you feel with your doctor. Do you have regular blood monitoring for inflammation levels like CRP or Plasma viscosity?

[PMRpro Ambassador in reply to tangocharlie]

Chatting with Sarah earlier - she agrees that PMR and myofascial pain syndrome are closely linked, we don't know which comes first but she thinks PMR that then spreads into the fascia, I think that may well be the case and when PMR is either not diagnosed in a timely manner or poorly managed that is when MPS gets entrenched and is difficult to sort out, And that is where Long PMR comes from - look at the people on here who have it

[tangocharlie in reply to PMRpro]

Could be. I had a frozen L shoulder which then seemed to spread after 6 months to the R one so assumed the problems in neck and shoulders were down to that. But then I was also very stiff in the hips - classic PMR. It was definitely frozen shoulders/bursitis first as I had ultrasounds which confirmed. When I'm in flares it corresponds with MPS but also a tight band around chest and upper body, which some people mention but I think are uncommon. I remember creating posts years ago trying to find if being young on diagnosis was connected with L-T PMR, or if we had anything else in common, frozen shoulders cropped up a few times. It shocks me now that my inflammation levels were persistently raised CRP 16-20 yet nobody saw the link to needing more steroids, the prevailing wisdom said 5mg was enough. I found this forum years too late.

Also not all people who get PMR in their 50s have it long term (definitely no need to panic mmjj) but it might well be that how long it takes to get a dx and get inflammation under control can affect outcomes and duration. It could also be some younger people have somethng like inflammatory arthritis which goes away quicker than PMR, the symptoms are very similar so may be misdiagnosed

[LozzaSandstrom in reply to tangocharlie]

I agree with having it for a long while before diagnosis, thats my story, only diagnosed when the pain spread to my arms and shoulders this year in February. Living with chronic pain in. my feet, hips, back and it was diagnosed as wear and tear. I really think mine will be a slow journey - already struggling with. my 2nd drop in 3 months and knowing its going to take as long as it takes.

[tangocharlie in reply to LozzaSandstrom]

If you're struggling on reduced pred you probably need more, it varies for everybody as to exactly what you need at any given time

[Mmjj in reply to tangocharlie]

Prior to diagnose I was seeing the dr and having bloods fortnightly, now also have osteoporosis but haven’t been seen by anyone/spoke to anyone for 4 months

[tangocharlie in reply to Mmjj]

I really think you need to get an appointment to find out what's going on. They will be reluctant to increase steroids if you have osteoporosis but you also need to manage the inflammation or that also causes problems, and as you said prevents you from functioning. If you're trying to work you will need reasonable adjustments to your hours and the workplace at least.

[PMRCanada]

I recognize the diagnosis of a chronic illness as a loss of our former self, and that loss will often involve grieving. Life becomes viewed in the context of “before” and “after” diagnosis. We go through a range of emotions similar to other losses we’ve experienced. For me I was in shock, angry, sad, and relieved as I had been suffering for 6 months prior to diagnosis. I was only 55….this isn’t the retirement I envisioned. Living with chronic pain impacts our mindset, and can remind us of our loss of health and wellness.

We find out that prednisone is the main treatment for our condition, and that in itself can trigger fear and worry, sometimes exacerbated by medical professionals who insist we taper off of it asap.

At some point we recognize that our body isn’t going to perform the same way, so adjustments need to be made. These adjustments actually helped me get to a place of acceptance, and reminded me that although somewhat different, there is still much to enjoy in life.

Part of acceptance is learning to live with uncertainty and various levels of incapacity that chronic illness generates. Sometimes it’s folks around us that can’t accept our illness, or they simply forget we are “sick”, especially when our symptoms are managed well, as PMR/GCA are “invisible illness”, like a lot of other AI conditions.

Sounds like 5mg is not the optimal dose for you right now. Listen to your body/symptoms and respond accordingly. Perhaps discuss with your doctor going back up to the dose that addresses your disease activity/inflammation.

Remember we are here for you and “get it”. Keep us updated and remember…with acceptance comes peace. Life can still be meaningful and fulfilling with an AI disease.

[MiloCollie]

I have moments of grieving for my old self and abilities then I remind myself there are others much worse off. You’ve tapered down to 5mg quite quickly so maybe just stay there for a good few more weeks til you feel more normal. You have to put yourself first and say no to things and people. You’ll get there. ❤️

[cycli]

Sorry to hear your are suffering and agree that maybe your inflammation isn't being managed. Amazed you have got down so quickly but you are young and still of the mindset that this can be got over if you set your mind to it. I would guess most on this forum had this approach when we found ourselves suffering all the symptoms we went through. As a very fit and active cyclist I approached all the symptoms I faced, which mirrored many I normally suffered whilst training and performing, so assumed they were the outcomes of too much activity and adjusted my normal treatments like physio, osteopathy, stretching and controlled training to correct the pain. I couldn't honestly tell you when I must have had the early signs of P MR or GCA, both of which I now have, but it must have been many years and i used my normal coping strategies to resolve and keep pushing on with my life. In a way I am glad I did because i managed to achieve a great number of things. However, it all came tumbling down nearly a year ago and I am now a completely different person from my old self. You will grieve for the person and life you had. You will keep hope to return to that. It is a difficult state but you will eventually accommodate the new you into a productive and positive person with changed objectives which you can manage. Maybe you'll get over it completely and go back to who you were and maybe it will come back to bite you in a few years hence. I certainly have no idea which but I truly wish you well and hope for the former. Meantime you need better monitoring of the condition . Good luck.

[Mmjj in reply to cycli]

Thankyou it’s certainly been challenging, I think I’m desperately trying to come off the steroids as I now have osteoporosis 🥺 and know steroids are not great for bone health.Trying to get a balance is so difficult, hoping to get a dr appointment next week to look at bloods and what he recommends but as time goes on I’m aware that we have to become our own drs x

[PMRpro Ambassador in reply to Mmjj]

Immobility and inactivity are also risk factors for osteoporosis - and it increases the risk of falls if you have uncontrolled PMR inflammation which makes you stiff. There are alternatives to being entirely off pred.

[Mmjj in reply to PMRpro]

Other alternatives?

[PMRpro Ambassador in reply to Mmjj]

The bisphosphonates which lead to protection of existing bone density or an increase over time. There are a few other bone building medications. None should be used "just in case" without proof of need but if you have osteoporosis (as opposed to osteopenia) they are worth considering.

[Mmjj in reply to PMRpro]

I’ve been prescribed Alendronic Acid but haven’t started yet as having just completed a dental implant. My question is, should I be rushing coming off of steroids due to bone health?

[cycli in reply to Mmjj]

Simpler answer is NO until you are certain the inflammation is under control and you have no signs of PMR or any other controllable state. Make certain you have osteoporosis and get a bone density before and now reference so you know where you are then take sound advice on medication or appropriate exercise/food in order to stabilise and improve it.

[Mmjj in reply to cycli]

I have had a bone density

[Mmjj in reply to Mmjj]

-3.4

[DorsetLady PMRGCAuk volunteer in reply to Mmjj]

In that case you probably do need to be on some medication ..have a look at ROS site for options/further advice -

theros.org.uk/#

[PMRpro Ambassador in reply to Mmjj]

Only if you want the PMR symptoms to return - and, depending on how long you have been on pred, to put yourself at risk of an adrenal crisis.

When was your first dexascan done and how long have you been on pred? It may not be the red that is to blame - many people already have low bone density before pred.

[Mmjj in reply to PMRpro]

I’m now on 5mg but many of my symptoms of Pmr have returned I’m reluctant to increase due to the ost

[PMRpro Ambassador in reply to Mmjj]

Up to you - but if the pred is even very sllightly too low, the left-over inflammation each day will just build up until you are back where you started again. Like my dripping tap analogy - however slow the drip, it will still fill a bucket eventually.

[Mmjj in reply to PMRpro]

Thankyou for responding I’m still very new to all of this and sometimes researching can lead you to be overwhelmed

[Mmjj]

I’ve been on prednisone since Aug 21 had dexa scan in feb of this year

[PMRpro Ambassador in reply to Mmjj]

It is possible that your low bone density is related to being on pred for 6 months but to have a t-score that low suggests you probably were well on the way there anyway.

Have you looked at the FAQs? They save you doing the confusing footwork of research - and are reliable and relevant.

[Mmjj in reply to PMRpro]

Will take a look, went through menopause at 45 which is deemed early so this can’t have helped

[PMRpro Ambassador in reply to Mmjj]

It probably didn't - were you never offered HRT?

[Mmjj in reply to PMRpro]

No and when asked if I could have instead of Alendronic Acid as a treatment was told I was to old (50)

[PMRpro Ambassador in reply to Mmjj]

One of my mates on this forum is still on HRT as far as I know - north of 80 ...

[Mmjj in reply to PMRpro]

I know, feels like a postcode lottery

[PMRpro Ambassador in reply to Mmjj]

Probably is ...

[DorsetLady PMRGCAuk volunteer in reply to Mmjj]

Probably didn’t -but it’s not the only contributing factor. I had hysterectomy at 37 didn’t have HRT - was on high doses of Pred for GCA so accepted AA -on it for 4 years.

Last DEXA after finishing Pred was fine -but recommended to stay on VitD/Calcium supplement, so I have.

[Mmjj in reply to DorsetLady]

That’s reassuring, now my dental implant is complete I can start AA from next week

[cycli]

I'm still on 30mg pred. after flare and not reducing yet. I have no problems bone density. That's probably just me and the active life I have always led. It will change and I'm hoping to reduce soon. What pred. does is not nice, but what pMR and GCA do uncontrolled doesn't bear thinking about. You may be a lucky one out of this quickly, but don't push for that by reducing pred. too fast Make sure you are clear of symptoms and able to operate without pain coming back.