PMRGCAuk
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A lot more pain

Hi everyone I was down to 2.5mg, now I haven't been actually pain free. But was doing ok.

But in last 2 weeks I have had increased pain, in shoulders, legs and knees.

I was back at the rheumatologist yesterday and CRP is 3.5 and ESR is 5 which is normal,

I was obsessed at getting my blood tested, because CRP and ESR always reflected on the symptoms I was having, but that dosn't seem to be the case anymore,

Doctor also thinks I should have the prolia injection for my bones.as he said I'm nearing osteoporosis,

I had increased to 5mg yesterday but I haven't felt any different, Doctor said to stay on 5mg for 6 weeks, but maybe this isn't enough, I have been taken ginger for over 2 years and thought it was doing some good, but I feel ginger has let me down😂 I'm feeling miserable now with pain. I mind my daughters 2 children 3 and 5 and trying to hide the pain from her, don't want her to know, as she had cancer 18 months ago and had a double mastectomy, should I just go to 10 mg??

I have had heel pain, and was at an exhibition, and they had a foot care stand, anyway guy there told me I had plantar fasciitis and talked me into buying a pair of massaging insoles, which felt nice, but after about a week, I felt a lot more pain in legs, and when I read about them, it says you might feel as though your muscles are being over-worked, just wonder would this be good or bad for our condition? Appreciate any feed back,

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Hi,

Sorry to hear about your recent return of pain, so disappointing.

Think you need to give the 5mg a few days to kick in, but if it’s doesn't then maybe a short sharp blast of 10mg may solve it. After a few days, you should then be able to come back down to 5mg and stay at that as Rheumy advised.

Although you say you felt okay, my guess is you were only just about controlling things and if that’s the case then it doesn’t take much for things to flare up. As for your bloods, might be idea to get tested again in a couple of weeks, they very often lag behind the symptoms.

I know you’re trying to do your best for your daughter and her children, but she does need to be aware that you are not so good at the moment. If you get much worse then you won’t be able to help at all, and that’s no good for any of you.

As for your feet, the trouble with insoles (even the ones especially mounded for your own feet) they correct one thing, but invariably throw something else out! If your body’s been working one way for a long time, it complains when things change!

Do hope you feel better soon.

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Thanks DorsetLady thanks for the kind words, thoughts, it certainly helps when your feeling low, I suppose I'm a bit stressed that if I got any worse, I wouldn't be able to help her, and I feel it's the least I can do, she been through so much, but she went straight back to work, and never complains,

But keeps asking me if I'm ok , and saying she could get someone else to mind the children, but children are happy with me, I wouldn't upset them.

But thanks I give the 5mg a few days, what your thoughts on prolia injection? Thanks again, don't know where we would be only for this forum.

Did you have many flares? I know you have beaten this, did you have to increase you dose by much when you would have a flare, many thanks and take care of yourself

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Hi again,

Do understand you want to do the best for your daughter and grandchildren, but you have to look after yourself as! Easy said, I know.

Can’t help on the Prolia I afraid; I was on Alendronic Acid for 4 years to counter osteoporosis - and I never had a problem, but many do.

Fortunately I never had a flare - seem amazing, but I just took things very slowly, and was never put under any pressure to go faster. I realise I was lucky in that aspect.

Take care.

Hopefully someone who’s been on Prolia can comment, or just type it in the search box.

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I've had PMR for nearly 2 years and have had 2 flares - each time, I'm sure I went below the dose of pred that controlled my symptoms. I was at 4mg last year and went up to 10mg for several weeks. By this Easter I had got down to 5.5mg, but flared again and increased to 8mg for what will be 6 weeks by the time I have a blood test (my CRP and ESR seem to reflect the situation) and if all is well, I'll start the DSNS taper in a fortnight, at 0.5mg / month.

6 weeks on 5mg may do the trick for you - it's too soon to say. I've been on an additional 2.5mg for 4 weeks and am just feeling the benefit in the last few days.

Do take care of yourself, so you are able to be such a good support to your daughter and grandchildren.

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Thanks Rugger thanks for your kind thoughts, my CRP and ESR always did reflect on pain and symptoms I was having, and really expected the blood readings to be up yesterday , trying to convince myself that I don't have pain, if you know what I mean. I was wondering when you would feel the benefit, thought it would have been straight away, thanks again and you take care x

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I think it’s fairly well accepted that those people that work need more pred, and caring for a 3 and 5 year old counts as work in my book! Nice work admittedly, but just as tiring as ‘going out to work’.

You’ve done well to get to 2.5, and going up to 5mg for 6 weeks isn’t the end of the world.... but it is double, 100% more, so give it a chance and it might be just what you need. And if you feel better, you’ll move more, which is the best thing you can do for your bones.

Maybe when you’re feeling more stable you can have a conversation with your daughter? “I was feeling a bit rough for a while, but in consulatation with Dr xxx, I increased my steroids a bit, and feel more in control now. My grandchildren certainly keep me on my toes, but I wouldn’t swap my time with them for all the tea in China!” That way you’re being honest without applying pressure. Your daughter knows they’re hard work, she also knows that Grandma is the best carer for them 👵 (my phone wants me to use that emoticon every time I write 👵 grandma)

Re plantar fasciitis. My son has/d it. Diagnosed by chiropractor when he had sacrificed-iliac strain (probably connected). She got him some rigid insoles with a pronounced arch. He had to start wearing them 2 hours a day and build up slowly. Did the trick :) He was wearing them all day eventually, but now wears them as he feels the need. (I haven’t heard him complain about his back ache for some time....shhh! Don’t jinx it!)

As for Ginger Spice, she may well do you some good when the steroids get a grip again. If you feel it’s doing you good, it probably is, even a placebo effect is valuable if it works ;) I’m rather partial to ginger tea, and am quite sure it helps me with that blocked up nose feeling, even if it isn’t helping, I think it is, and that’s what counts.

Feel better soon.

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Thanks Soraya PMR you makes a lot of sense, I was very fit up to nearly 3 and half years ago, when I was hit with PMR and then GCA, before that, I worked up to 2013, and I've minded the children since babies. And it was never too much for me. Now I would love to feel a little bit normal😏

I just feel so guilty about my daughter, as I wish it had of been me, cause she so young 35, the shock of cancer is always so hard, such a selfless person, she booked a trip away in January for myself and husband, as I have another daughter lives away with 2 children, so it was great to get away and see my daughter, her husband and children,

I had great believe in the ginger, felt it always kept the CRP and ESR within there range, and then that always reflected on pain and symptoms. So I really expected my CRP and ESR to be high yesterday when I was back to see the doctor, but like DorsetLady said maybe they lag behind the symptoms.

I really miss my walks, and that's obviously not helping my bones, it's great getting the support from you all, I really do appreciate it, look after yourself x

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Maybe the ginger can help in conjunction with the pred, but when the pred is a squeak too low, the ginger is fighting a losing battle?

I understand what you mean about your daughter. When my son was 17 he had a nasty accident. I too wished we could have swapped places. Your daughter sounds lovely.

My CRP & ESR have never been raised, so nothing of benefit in their levels for me. So I have to go by my symptoms. My doctor never fails to tell me they’re ‘normal’. But with appropriate levels of pred, I should hope they are ‘normal’.

(Sacrificed-iliac strain! No! SACRO-iliac strain. Bl :o dy predictive text!)

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Ye I know what you mean, I nearly get myself into all sorts of trouble with predictive text, so now have to re read everything,

I know last year I was away for a few days, and didn't have my ginger, and I was Back with consultant, ( member of the team) and I felt OK, but my readings CRP was16 and ESR was 20.

So Doctor wanted me to increase to 20mg for 2 weeks, now she said she was acting on side of caution, but I just increased from 3.5mg to 5mg, I was back on my ginger, and had bloods done 2 weeks later and CRP 3.7 and ESR 8,

It's like the ginger keeps the CRP and ESR under control but not the pain, which I know dosn't make any sense😀

My daughter she always thinks of others, even my son said when he asks her how she is? she just says fine, and will turn it around and ask you how you are? She will never talk about it, don't think it's a good thing!!

Do hope your son is ok now, and must have been a nightmare for you, my son was very ill when he was 18 he nearly didn't make it, a blood clotting problem. But he's been on warfarin ever since, and he fine now. But you would swap places with them if you could.

Thank you for all the advice and information, and kind thoughts.

When I bought the massage soles, I wore them for a week, then read up on them, and like you said, your only suppose to wear them 3 hrs a day at first☹️

Take care

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10 years on my son is fine, thanks. He didn’t listen to the anaesthetist’s poor predictions! Just deaf in one ear, sooo much better than it could have been :) Kids! Do we ever stop worrying??? (Rhetorical, no, never!)

Maybe try your insoles again for short periods?

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Sounds far more suitable - Sacrificed-iliac!!! I felt pretty sacrificed!

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Elizcarroll need to correct some misinformation from me: son wears his insoles all the time now, except if he’s in bare feet or Birkenstocks (which have built in support). He says it’s not worth NOT wearing them, as if the pain comes back it’s there for a few weeks. Wearing the insoles he gets no pain.

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Thanks Soraya PMR I did leave them out of shoe for a while today, it probably wasn't a good idea to wear them continuously, when I bought them first, it does state to wear them for 2 or 3 hrs a day to begin with. I think they most definitely over work leg muscles😏

Someone had told me to use tennis ball, but it did hurt, but I wil do what your son advised, I've just taken a can of beans out, so going to try it, I let you know how I get on, many thanks X

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Yes, do let me know. He’ll be chuffed if it helps you.

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Some advice from my son with the PF: roll your foot over a baked bean can to massage the underside. He says you’ll know when you get the right bit as it will hurt a bit but then you’ll feel it (tendon) relaxing. Initially do this at night before you get into bed, so your feet remain relaxed. Later do it anyplace anytime apparently!!! He suggests a rolling pin under a desk if you work (that did make me laugh) or anything cylindrical and strong enough.

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Hi Soraya PMR well I've been using the can of beans for a week now, it is a lovely foot massager, you can feel it working the foot, and it's so relaxing😴 And I'm wearing the massage insoles everyday now, I will continue to use the tin of beans cause I know it's helping, thank your son for me, my granddaughter wanted to know why I had a tin of beans in my sitting room, I said to her just in case I get hungry 😄😄😄 thanks again

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Read your update to son and he says ‘You’re welcome’.

Tell your G-daughter that Beanz Meanz Happy Feet :)

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Plantar Fascitis will improve if you wear shoes that lace up. It is also known as Policeman's heal caused by walking. I had it badly but since changing to lace-ups when going for walkz, I no longer suffer

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I did the same initially for my PF - did have to have the hydrocortisone injection in the end though - but was a complete success - that was last August

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Thanks ye its definitely from the walking, cause I had been walking for around an hour one day, we couldn't get a taxi, and son in law suggested we walk, ( so I blame him😀 ) and heal was killing me after, so I paid for it. The massaging soles are nice, but don't think they should be worn all time.

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My rheumy has advised me to walk more but I am struggling to walk

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If you can walk at all, even with assistance, just do a few minutes every day. Don't overdo it. You may find your stamina improves fairly quickly, especially if you are otherwise pacing yourself and allowing yourself to take the time to rest and convalesce from what is, really, a fairly serious condition.

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You will struggle if you suddenly try to walk for a long time compared with what you have been managing. You have to build up slowly.

Last spring an 80 year old guy on another forum was complaining he was unable to do anything and was stuck with using a wheelchair to go any distance. So I told him to just walk for a few mins the first week - maybe a couple of times a day if he felt up to it but not any more at one time. And rest the next day. Over time he built up how much he walked at any one time just 1 or 2 mins at a time, doing the same amount of time for several days. By the autumn he was walking miles and spent the entire ski season teaching classes and is now out cycling with his mates.

It will come - but not all at once. And remember, 5mins at a time 3 or 4 times a day, well spaced out, is the same as a 15-20 min walk.

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What number t-score represents "nearing osteoporosis"? And has there been a trend?

Anything that changes the way you stand or walk will have an effect on the leg muscles - and even the back. It is always a good idea to start with just an hour or so at a time and build up. Bit late I know - but start from scratch once the discomfort has calmed down.

PMR can flare too - it isn't just overshooting the dose you really need.

What about someone to help you out occasionally? Best of both worlds...

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Thanks PMRpro ye I should have asked for a reading of dexa scan, I had a dexa scan over 2 years ago, and I was told osteopenia, I suppose I just wasn't in form on Monday, I was puzzled when he said nearing osteoporosis, I thought to myself what does that mean?

do you know much about prolia injection for bones?

I think if I could just get control over the pain, I would feel human again. Just hope 5mg will do it for me,

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To control the pain you need ENOUGH pred - without the right dose it is a waste of time, the inflammation just builds up over time and then you get a proper flare.

Prolia or denosumab had been hailed as the miracle drug (weren't they all) but recent work has shown that taking it for a few years and then stopping results in a rebound loss of bone density so either you continue taking it or have to switch to a bisphosphonate.

Depending on how low your bone density is, it is perfectly possible to build bone density naturally - HeronNS is our resident guru there as she did it.

healthunlocked.com/pmrgcauk...

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Late to the conversation as I've been away and missed a lot. This may interest you:

healthunlocked.com/pmrgcauk...

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Thanks HeronNS for taking the time to reply, PMRpro had sent me your link, I would prefer to build up bone density naturally, as I don't like taking medication, I'm very impressed with how your bone density improved,

I Was prescribed alendronic acid, but they didn't agree with me, and I heard enough on this forum to put me off, and recently I was prescribed prolia injections,

So I'm going to work on diet, I've started to eat sardines, and more foods containing calcium, thanks again

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Prolia is the med you really don't want to start as it looks like many people can never come off it again. Rebound osteoporosis can lead to fractures which are directly caused by discontinuing denosumab and are not related to the original bone thinning diagnosis which it was intended to treat. I can't understand why it is still being offered so casually to patients. Should be one which is held in reserve only for people who have no other options.

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Particularly since you have to go onto alendronic acid or the like once you stop the Prolia. And THAT alone should give them pause with a patient who cannot tolerate bisphosphonates in the first place.

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Thanks PMRpro, I just hate taking pills, and I would like to build it up naturally, I had 2 dexa scans over last 5years, and the second one which was 2 and half years ago, I'm sure the doctor said it had improved slightly, and Monday the doctor said I was nearing osteoporosis. Just wasn't feeling very assertive that day, I had been sitting for 3 hrs and I wasn't feeling the best.

But I might skip the injection and concentrate on calcium and maybe a lot of protein foods for our muscles, thanks again hope your doing ok

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