Feeling somewhat abandoned

Had a rather, to me, unsatisfactory regular check in with doctor this morning. There were a number of things I felt she didn't really address as fully as I'd have liked her to (take ibuprofen as an anti-inflammatory for the shoulder that's been giving me random wrenching pain for several months. for example). But the clincher. Me: shall I come back in three months as usual? She: No, as your prednisone dose is so low, why don't you just use up what you have and stop, and see what happens. Come back if you feel you need more. On the plus side, for the first time she noticed I wear a step counter and congratulated me on the exercise I do.

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  • "Feeling somewhat abandoned"

    That appears to be happening to me in the UK. Don't know what dose your on. Though we were not supposed to take ibuprofen whilst on pred. I too have shoulder problem on 6.5 mg :-( think it is because im on close lowest dose I can tolerate at momen. Will stay on thisdose for a while to see what hahappens :-)

  • Interesting Pete - I'm on 6mg (reduced from 20mg, April '16) and this is the first time I've become aware of a persistent shoulder pain. I'm right-handed and it's the right shoulder that hurts. Like you, I'm tempted to hold off a further reduction for the moment and see how it goes....

  • Just picked your thread up! thanks Rokerman.

    For me the PMR started with right shoulder pain and after a wrong diagnosis of rotator cuff injury, the pain started in other places, i.e. top of legs/buttocks and could not lift legs up to walk properly. After a long story I was eventualy diagnosed with PMR.

    I started on 15mg about 2.5 years ago and find if I reduce too quickly the pain comes back firstly in that shoulder. So I am now going from 7mg to 6.5mg using DSNS but using the 4 week version. I'm not on 6.5mg every day yet and am getting some pain in the evening in right shoulder. So I am at the cautious stage to try and figure out if I am at the limit of reduction for the time being? :-( :-)

  • The start of your symptoms and the way it quickly developed, mirrors my experience exactly! When I found that I couldn't move the duvet off me (after my 2hrs sleep...!), I was persuaded by my wife to go down the private route and was diagnosed within 24 hrs!

  • 😳 good grief Heron. It's a good job it's you and you know what you're doing! Your group here will never abandon you. Crikey was she having an off day? I suppose they do,there is nothing saint like about my son in law ( GP) as far as I can see. Have you seen a physio/ chiropractor about your poor shoulder?

    I over did it with my step counter ( competing with myself) . I am in Bologna, too much exploring. Spent my last day properly knocked out. That'll teach me ( only about 400 steps today).

  • Is Bologna worth it? I have stayed on the campsite there (nowhere nice, just out by the Messe somewhere) and was thoroughly eaten by their bugs so haven't been enthusiastic about returning...

  • I am in a quaint little house in the old part of Bologna with a wonderful view of medieval buildings hills and churches and of course the twin towers. The porticoes that cover the pavements are impressive as is the terracotta colour of the buildings. It has been 32 degrees ( Sunday). No insects at all yet, very efficient swallows. The churches are pretty awe inspiring. But I have over done it. Been on the roof terrace today but we can't stand the heat and sun for long with PMR, or I can't. ( This is for PMRpro). There are bits of Italy I prefer though. Certainly stronger than the last time I went away.

  • No, sun in those temps isn't a good idea with or without PMR! We have had UK-style weather the last few days, utterly disgusting. But they are promising over 30C here next Sunday - at an altitude above the top of Snowden...

    Enjoy!

  • Sheffieldjane, my physiotherapist checked my shoulder carefully and there doesn't seem to be an obvious injury. She told me to keep on using the arm as normally as I can. The problem is I sometimes move in a normal way, and get this wrenching, can bring tears to my eyes, pain in my upper arm. It's like something is not in quite the right place, or not strong enough to bear the weight of my arm, or something. Anyway in the big picture I suppose I shouldn't complain. But I am tired of being told not to worry about things. I'm not "worried". I hurt!

  • Hi Heron

    I have been following this site for the past two years whilst trying to reduce my pred. I am down to 3 mg and no longer seem to be having PMR symptoms. I am sure that any pain I am left with is muscle wastage, caused by taking pred for over three years.

    Your shoulder problem sounds exactly like one I had towards the end of 2016. I had the wrenching pain and weakness. It was my dominant arm (left), which was a nuisance, as I couldn't safely lift things in the kitchen and it was very painful to change gear whilst driving. I was referred to the physiotherapist, who diagnosed that the muscles at the back of the rotator cuff were so weak that my shoulder was beginning to dislocate. To demonstrate this, she lifted my shoulder into the normal position and the pain reduced. She gave me appropriate exercises and monitored my progress every fortnight. I diligently did the exercises and gradually found improvement, which accelerated, as I became more able to use my arm normally. The only painkiller I took was paracetamol, which took the edge off the pain - it was the exercise that strengthened the muscle and reduced the pain. Hope you get something sorted soon.

    Jen

  • Hi Jen, thanks for suggestion. Actually that's the first thing my physiotherapist checked, and apparently rotator cuff okay. I'll just soldier on! I'm not going to use any painkillers for it, because the wrenching pain is so momentary and the other is really just minor discomfort and I shouldn't complain. :)

  • Hi Heron,

    no wonder you feel abandoned! I think I would too with that sort of comment. I know you're on a fairly low dose -2mg? Or similar, but you still need to taper, not just stop - unless you think PMR/GCA has burnt out.

    I know it's not recommended that you take ibruprofen tablets with Pred, but my pharmacist told me that gel - used sparingly- is okay, some may disagree I know, but I used it when my Pred doses were low. And I'm still living! Still using the gel as well!

    Do you know what your shoulder pain is? If it's arthritis, you could still have a steroid injection if that would help. I know it's steroids again, but it's more localised and something my GP did quite happily for my knee whilst still on the Pred. In fact I'm hoping for another injection next week!

  • Ibuprofen is a drug which I think is contraindicated in my case because of family history. Actually when she told me ibuprofen my brain heard acetaminophen, so I told her it never worked for me. Having never had ibuprofen I suppose it might work, but why shouldn't I just take aspirin? Why does everyone seem so terrified of aspirin these days? I strained something this past winter when clearing snow off the roof of my car and months later still not better. My miracle worker physiotherapist tells me to keep moving and using the arm so I don't get frozen shoulder.

    Re steroid injections. I actually asked if I could have a steroid injection for my foot when I saw a podiatrist, and was told they didn't do that any more. So that's another area of pain, at times quite significant. It doesn't seem fair does it? We work so hard to get well, and look after ourselves, and then it's one thing after another and we're told it's not old age, old people don't have to suffer. Well what is it, then, if not a consequence of wearing out? And if I don't have to suffer just because I'm old, why can't they heal me? Sorry, shouldn't grumble like this! It's finally a warm sunny day and it is good to be alive!

  • Know exactly where you're coming from - I had a down day a couple of weeks ago - pain from arthritic knees and shoulder got too much! And I thought exactly the same, I've spent 6 years getting through GCA et al, you get to the end and think everything's going to be okay. Trouble is life has gone on, and your body has aged through the intervening years, so everything's not quite a rosy as you imagined. Makes you want to spit!

    But never mind, I'm over my tantrum now so back on an even keel and smiling again! And yes you're so right - it is good to be alive.

    Take care.

  • Hum - hope she will provide enough for you to continue reducing as you have been!

  • I have an unfilled refill for 100x1 mg tablets, which at current pace should see me through to when the next appointment should be. I know she'd renew. I'm just shocked that she'd tell me to use up my tablets and stop to see what happens! Plus I am still on pred, although at low dose, so shouldn't I still be monitored? Btw I saw a different doctor three months ago, my own being away, and she asked for CRP (apparently they won't do both CRP and ESR at same time for routine monitoring) and the number is 15. We leafed back through my file to when I was first diagnosed two years ago and it was 40 then. One of those numbers former doctor thought wasn't high enough to trigger concern. Sigh.

  • One is left to just wonder...

  • Unfortunately I think this is part of a pattern of care that many of us seem to be receiving at the hands of GP. I'm never asked to make another appointment, never asked to get blood tests except now because I'm on lefludomide, my GP doesn't know what dose of pred I'm on - all a bit DIY I'm afraid. At least as someone mentioned you know what you're doing and just to slowly taper down is obviously, I feel, the best solution. As you say the add ons are a pain( literally and metaphorically!) hope these get resolved soon. X Jackie

  • Oh dear, I'm now feeling very ungrateful for the thoughts I had about my gp yesterday. I had a telephone appt, and told her about the problems I was having getting down to 10mg (3 attempts, and to me it seems obvious I need about 11-11.5mg to control my symptoms).

    Her reaction was that we need to take a closer look in case there is something else going on, but to me my symptoms are absolutely classic, and previous blood tests have shown ESR & CRP very little raised (even before I started the pred), and all else normal. I suppose it could be something skeletal, but it seems such a coincidence that such things should develop within 9 months of starting treatment. Apart from the odd strained ligament and a rotator cuff problem I've never had any issues before. I felt really down, that she couldn't just accept that I can't taper in line with what is supposed to be the steady pattern of reduction. It feels like life is hard enough without also having to feel apologetic or defensive, especially when I'm working so hard with diet, exercise and pacing - to the extent that my life has been taken over by this wretched condition.

    I'm sorry Heron - I've hijacked this into a personal wallow. I really set out to say that, despite my frustration, I can at least feel that my gp is interested and "hands-on", and it must be even worse to feel abandoned. Hope you can work things out in a way that feels right for you.

    A final mention about the shoulder problem. Has anyone tried Pernaton? It's a green-lipped mussel extract that I use for aching or painful joints (currently my old rotator cuff shoulder that's playing up a bit). I find it really soothing, less aggressive than something like Deep Heat, and without any drug complications. It's very pleasant to use - doesn't smell at all fishy!

  • Hello Patience_1..I am very interested in what you say about Pernaton.. I used to take green lipped mussel tablets in my earlier stages of PMR for the inflammation but I have been having lots of Shoulder and Upper arm problems recently .. Do you buy Pernaton in a Health Shop or can you get it in a chemist. I am able to use Boots Freeze Spray which eases it for a while in between my treatment from my Bowen Therapist but I don't like to spray too frequently. Unfortunately this condition does kind of take over our lives , I've had PMR for 13years but it's the other things that come along with it that gets me down .. We just have to keep Positive .Reading other sufferers posts sometimes makes me realise that it could be worse but on my Angry Days I think Why Me!! Best wishes, trish29

  • Hi Trish, you are so right - reading about how badly other sufferers are affected can be very salutary - and to think you've had it for 13 years... There are certainly up and down days, and perhaps due to the medication as much as the condition, I find my moods can easily switch. Yesterday was rainy and miserable and I was very down; today it's sunny and a bit of optimism has come back!

    I get pernaton gel from Amazon (uk, but probably available in other countries). It comes in various sizes and can seem a bit pricey but lasts a good while. It also comes as a bath lotion, and again I found that on Amazon, via an independent retailer. Doesn't last as long but I find it comforting to use.

  • Thank you Patience_1 ..I will certainly look into the Pernaton Gel.. the good thing with this wonderful Forum is that you always learn from Other sufferers ..When I go to our Support Meetings I find that I learn more from other Sufferers and how they cope . I find I am very lethargic on Grey days and better when the sky is blue but I didn't cope with the recent heatwave . trish

  • I really do find the PMR itself is relatively simple to manage with pred - but the myofascial pain stuff is agonising and unless I'm on a really high dose of pred (in PMR terms at least) it doesn't help.

    But the myofascial release physiotherapy I'm getting is wonderful. All the more reason to stay here - because I know I'd struggle to find someone to do it in the UK. I had a massage this morning - and every time I squeaked she commented she could feel the hard tense muscle. So it isn't just me...

  • Oh dear Heron...I do feel for you. As far as the ibuprofen goes....I'm not supposed to take it for 2 reasons..pred and asthma, but sometimes it's all that will work for my back so I do take it..but restrict myself to 2 or 3 days at a time. I know they say the anti inflammatory properties don't kick in for about a week but I find it helps. Do you take Omeprazole? or the like?

    I just read further down about them not doing CRP and ESR together as routine?? I wonder why that is? I do feel it's a good job we all have this forum to come to. There is nothing to stop you from going back if you feel you need to...and as she has 'dismissed' you she should at least ensure you have enough pred to get by. I hate to say it...but I'm not averse to a little white lie on my dosage to make sure I have enough!! Take care :)

  • Probably because they don't consider having both adds any information - and doing both costs more. For some people ESR tells them something, for others CRP is better. And for some of us - neither of them figure in the least!!!!

  • Eileen, my ESR was in the 20s, as high as 29 six months ago, and still in mid 20s three months ago. I was interested to see the CRP is also what's considered a bit high, as it seems that number is supposed to be in low single digits. I suspect it should be useful for the doctor to see that, although she does seem singularly uninterested in asking why my levels aren't lower. I'm pretty sure I'll back in three months for a pred renewal, because even if I can do DSNS without pause between tapers it will take me more than three months to get to zero, if I can. At that time I'll ask for the ESR test again, and also the Vitamin D test I should be entitled to.

  • Altywhite, where I live they are doing everything they can to "save money". That's the only reason they'll only do one test. Regarding the pred dosage: my last prescription was written six months ago. I had not needed to get the single refill yet because I've tapered so low, and I did in fact have an old prescription refill left over before I started filling this one, so I made sure I was well stocked. But she never asked my how much pred I had left. For all she knew I might have had a couple of weeks only, although in that case I would have asked for more.

  • They're all trying to save money I suppose aren't they? She just sounds like she's happy for you to sort yourself out!! Which I suppose is what a lot of us do....as long as she is there if you need her. Must admit, my GP tells me to do what I like with the pred according to how I'm feeling, but I do see the rheumatologist 3-6 monthly. Not that that always goes as well as I'd like!!! :)

  • She's happy enough for me to sort myself out, but she doesn't help me with other things that I don't seem to be able to sort out, just tells me either she's not worried or that I shouldn't worry. I'd like a bit more detail than that, thank you very much ;) ! E.g., why shouldn't I worry - what is it?

  • I know, it's really difficult isn't it..makes you feel like you're being fobbed off a bit!! I think it's hard to explain to them why you want more explanations. I think that's why this forum is soo good....sort of substitute medics..or counsellors..haha!! :)

  • I take the occasional ibuprofen because it's the only thing that works on my osteoarthritis pain that has asserted itself as my pred dose tapers. I sometimes use the gel if it's my finger joints causing the most problems.

    Also, my rheum doc has never ordered an ESR. I see her every 2-3 months and she always orders CRP and other blood tests.

  • I saw my Gp last week,she was running 45 mins late.I felt she was rushing me.She said I've been on Pred for too long now (18months) have reduced to 4mg now doing DSNS method from this site.She told me to stop taking it ,I said I would rather do it gradually and she said am I scared to stop? She begrudgingly gave me another prescription.

  • Hi Sandra, I do despair of some GPS. Did she suggest what you could take instead or was she happy for you to just suffer? Thank goodness you have got another prescription.

  • Hi Piglette,No she didn't suggest anything else.The results of my blood tests were all normal so I suppose she's going by that,although they've been normal since the first few months of taking Pred.!

  • Sandradsn, considering the fact that you'd have an adrenal crisis if you suddenly stopped I'm shocked at the advice from your doctor. Even if PMR is in remission you still have to make sure you've got enough cortisol. I'm better off than you as I appear to have got successfully to 1.5, but even at that I will be very careful as I approach zero. I won't stop dead, I'll treat the "zero" days just as if they were "low dose" days and introduce them slowly.

  • I'm seeing her again the end of July after another blood test,she's expecting me to be off pred by then,I know my body and will go by how I feel before reducing again.She referred me for physio on my hip but has never asked how the bursitis is.Fortunately it is so much better since giving up the physio,I declined going to the gym and going on the cross trainer and bike!😳

  • Hi I cannot believe I saw this earlier today, as for the last 4 months I've been suffering with the same shoulder problem! The pain you described HeronNS is bob on, it virtually knocks you to your knees! I also agree that the GPS get very complacent. Mine is the same, before I could even get aMRI scan they made me see a bone specialist ( sorry can't for the life of me recall the name ) personally I was over the moon as I can't remember the last time I saw any specialist. He was so nice and thorough and really listened, and he thinks it may be frozen shoulder although I tend not to agree! He has sent me for a MRI as I have compressed nerves in my neck and he thinks they are now bulging and causing problems! He also offered me steroid injections but the thoughts of that needle going in makes me want to faint! Think the gp was suprised sure he thinks I'm imagining it! So I understand what you mean mylove! We should demand better treatment for us sufferers lol 😂

  • janethaywood, I had an odd day on Saturday. For some reason my left hand was feeling really odd, like the bones were out of joint or something, and when I tried to do things it hurt terribly and I couldn't hold onto things because of that. So, picture me struggling to bring in a full laundry basket of dry clothes, a right arm which says, no I refuse to bear weight today, and a left hand which says, you don't expect me to carry this load do you! Anyway, I sort of hugged the basket and got to the door, where my normally oblivious hubby said, would you like me to carry that for you? I tried to google the hand symptoms but couldn't find anything which quite matched what I was feeling. Oddly enough it was much better yesterday, and seems okay today. Read a post on Patient forum where it was suggested to another person complaining of painful hands that it could be caused by compression of nerves in the cervical spine, and that makes a lot of sense to me, even explaining why pain came and went so quickly, which you might not expect if it was originating in the hand itself.

  • It's a horrible feeling to lose all sensation in your hands, and that post is probably correct in saying compressed nerves! Those sods cause so many problems it's unbelievable! I do hope you manage to find some answers love ❤️

  • Thank you. I didn't lose sensation, rather I had strange sensations and pain when using the hand. Rather too much sensation, I'd say! But if the pain originates in my neck, then I think my magic physiotherapist will be able to help me at least slow down what may be an inevitable progression. I've had issues with other parts of my spine regarding pain in lower limbs for a long time, so this is probably just another notch on the tally of just how many body parts can hurt!

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