I'm getting very worried reading some posts - PMRGCAuk

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I'm getting very worried reading some posts

Dee29
Dee29

Hi

I've been reading some posts and am getting very worried about having PMR.

It all started with me having small amounts of protein in my blood, I was under the Haematologist for approx 18mths and was discharged from his care earlier this year but he recommended my GP to refer me to see a Rheumatologist which my GP did. I have been seeing her since June '17 and after numerous blood tests, x-ray, bone DEXA and finally MRI I was diagnosed with PMR in my Left leg around the knee area along with other problems in that area which she feels is down to Degeneration, she doesn't state whether it's age related or due to PMR but has now referred me to Specialist Physiotherapists. I also have a small Ganglion Cyst in my left knee....quite rare according to the NHS website!

During this time I was put on 10mg Prednisolone to deal with shoulder/knee pain and have been taking that for approx 5 or 6 weeks, Rheumatologist has recommended a higher dose now (I think it was 15 or 20mg) and this is what is worrying me badly.

So far, being on Prednisolone hasn't affected me too much although I have noticed my Anxiety levels are up a bit....I already suffer from Chronic Depression, Anxiety and have panic attacks if out and there are crowds of people around me. My worry is if the higher dosage might acerbate these, if it does I do not know how I will cope, I truly don't. Is there anyone out there that have not had this side effect of Prednisolone?? I know only too well that everyone reacts differently to medications, last Friday my GP told me he didn't know how I was functioning at all with the medications and dosages of them yet other than feeling tired now and again I function pretty well!...was also a bit of a cheek to tell me that when HE prescribed them for me in the first place!! :-o

Anyway, I better stop here or I will "waffle" on for ages!

I hope everyone is as well as they can be and enjoying this fantastic weather we're having :-)

Dee

26 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Dee29,

If Rheumy thinks you need higher dose for your PMR, then you probably do, and would be wise to follow his advice.

I appreciate that some suffer from anxiety, and that the Pred doesn’t make that any easier, but just because it’s listed as a side effect doesn’t necessarily mean it will affect you. But you probably need to discuss with GP before you increase dose.

Personally I never suffered from anxiety attacks and started at 80mg - but maybe that’s just me.

Sure others that do will be along with advice.

Dee29
Dee29
in reply to DorsetLady

Hi DorsetLady

Thank you for replying and your advice. I did see a GP yesterday evening and he increased my Pred dosage to 20mg which I started this morning so I'm sure I will shortly be able to tell if it is the Pred that is causing raised Anxiety or if I was just having a bad day which is possible.

By the looks of the replies I have had to this and another post I made I am still on a relatively low dose of Pred and hopefully it will work for me.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Dee29

Hi,

Well if it’s PMR then it’s sort of mid to high range, usual starting is between 15mg-25mg depending on different factors. But as others have responded to your other post it’s not high for GCA - that’s 40mg-60mg, higher if visual issues.

Hopefully it’s only PMR, although that’s obviously bad enough.

Just monitor things, keeping notes, and obviously if necessary back to GP.

PMRpro
PMRproAmbassador

Increasing anxiety really is the exception rather than the rule with pred. I won't deny that some people do suffer it when on high doses but by no means everyone. Untreated or inadequately treated PMR is felt to be more likely to progress to GCA - and then you have no choice unless you want to risk permanent loss of vision.

I didn't get any anxiety from the 40mg of pred I started on, more a feeling of relief to be pain free & able to walk without hiking poles after many months.

Dee29
Dee29
in reply to Janstr

Hi Janstr

Thanks for your reply, as I have said to DorsetLady, maybe I was just having a bad day when my Anxiety level was raised and that it might not be the Pred at all.

I'm glad that you have gotten relief from Pred, it must feel so good to not be in pain all the time :-)

Constance13
Constance13
in reply to Janstr

Ditto!

Hi Dee,l hope that if the higher dose of Pred relieves your pain that your anxiety will be less,l personally did not suffer from that side effect,l was far more anxious and depressed before l was given the medication ,because of the pain l was in. I hope that as you begin to have a lot less pain you will feel less anxious.

Dee29
Dee29
in reply to Grants148

Hi Grants

I know it's only been a few days (seems like weeks though!) that I started taking 20mg Pred but it doesn't seem to be doing much for the pain and my body is swollen up in so many places I'm beginning to feel like a balloon! :-o

My anxiety has been ok but then I have not been anywhere to make me feel anxious but tomorrow I'm off to a River Festival where there will be 1000's of people so I guess I will find out tomorrow....nothing like jumping in with both feet is there! lol

PMRpro
PMRproAmbassador
in reply to Dee29

Are you doing your bit? You have to pace and rest appropriately - not carry on regardless thinking the pred has "cured" something - it hasn't. You are still ill - don't forget that.

And the bottom line is that either you need a bit more pred (up to 25mg is recommended in the guidelines or it isn't the PMR we talk about. PMR is just the name given to a set of symptoms which can be due to a range of underlying causes.

Dee29
Dee29
in reply to PMRpro

Hi PMRpro

I am trying to do my bit but it's not easy when you are already disabled before PMR is even thought about! I don't sit on my behind all day, I try to move around every hour or so and on good days I've even been known to potter around the garden dead-heading the Fushias, etc. I am under no illusion that the Pred has cured anything because I don't feel any different now than before going on it. If anything I am noticing more inflammations appearing, especially in my lower legs along with "bruising" and veins sticking out all over the place (ever seen a wormery? It looks like one of those some days!) mainly on my right lower leg.

After reading more posts on here I was beginning to wonder if dosage of Pred is enough, seeing how 20mg is NOT helping me at all but am unsure who is best to contact to rectify it...Rheumy or GP?? (Rheumy was the one asking the GP to prescribe Pred in first place so I guess it's the GP?)

PMRpro says: And the bottom line is that either you need a bit more pred (up to 25mg is recommended in the guidelines or it isn't the PMR is just the name given to a set of symptoms which can be due to a range of underlying causes.

That I cannot tell you as I am not a Doctor or Rheumatologist :-s ....all I know is that is the diagnosis given to me by my Rheumatologist and she knows about previous injuries, health conditions, etc.

PMRpro
PMRproAmbassador
in reply to Dee29

If 20mg isn't helping you at all after a few weeks there are two options: you need to try 25mg or it isn't PMR.

If that doesn't work - the rheumy is very possibly wrong in her assessment and she needs to think again. One of the basic criteria is that PMR responds to a moderate dose of pred. If what you have doesn't - there is not a lot of point continuing to take it and stacking up the side effects of high dose pred. It cures nothing, it manages your symptoms. If it isn't managing the symptoms - why continue to take it?

Time for a frank discussion with your GP first of all - easier to relate to than a hospital consultant.

Dee29
Dee29
in reply to PMRpro

Hi again PMRpro

Although it seems like I've been on Pred forever it is only one week since I started taking 20mg per day, up until then I was on 10mg for approx 7 or 8 weeks to help with the pain from Osteoarthritis in my spine, shoulders, left elbow and possibly my left knee but this has turned out to be something else instead. The problem for me is that being Physically Disabled to start with I don't know whether the pain is from that or from PMR. The last few weeks have seen my Fatigue go to new levels, I have had bouts of it from time to time for a long time now (years) but now it's an almost daily occurrence and so bad that I can do nothing physically at all except sit on my bed and relax (due to my disabilities I cannot sit in chairs for long without being in extreme pain so I sit on my bed during the day as it is more comfortable for me)... is this normal?

PMRpro
PMRproAmbassador
in reply to Dee29

Possibly - if you have multiple problems as that makes it difficult to say whether your pain is PMR or something else. But the bottom line then becomes: Does the pred improve the pain level? If it doesn't - there is not a lot of point in taking it. It is unusual to use pred for the pain of OA - even though it does seem to work!

Hi Dee29

I have suffered from Anxiety Disorder and Post Traumatic Stress Syndrome for probably over 25 years now on and off. For the last 10 years I have taken Sertraline which I find really good and it null and voids my anxiety altogether. I did take 50mg daily but have whittled it down to 25mg daily the last year by halving the tablets they are easily cut in half. Over the years I have taken a number of pills for anxiety, I am one of the 25% of people with depression/anxiety who suffers only from just anxiety and not depression as well. When diagnosed in February this year I was worried about taking steroids, I tend to get almost high on them and do not stop moving or talking (poor hubby). I was put on 20mg Pred gastric coated and I have suffered no increase in my anxiety at all. I think it might be that the Pred had a lot to deal with the high inflammation levels I had plus the pain which was awful. Now down to 15 mg Pred and feeling a little fatigued but all good so far. Take care

XXXXXXXX

Dee29
Dee29
in reply to saffron52

Hi Saffron52

Thanks for replying, I'm so sorry to hear of your journey, I could not imagine what you went through before Sertraline came into your life. I've suffered with Depression, on and off, for the last 43yrs but it's been in the last 10 or so that it has gotten really bad due to events in my life, enough for me to get help from my GP. I take VensirXL 75mg in the morning and Trazadone 150mg at night for it and that works for me, it even dampens down my anxiety unless I'm in environments where there are crowds of people all around me, then I get jittery, hearing goes funny and heart beats like a drum on a Techno CD but I'm putting myself in to those situations a bit more now to try and force it to disappear....its a kill or cure remedy and so far I've not been too bad, of course I have my partner with me, I couldn't do it on my own thats for sure!

Funny you should mention High Inflammation Levels because mine were sky high (ESR 76) and I still have lots of Inflammation over my body even when I am at rest with feet up. Should it be like this?

Take care xx

saffron52
saffron52
in reply to Dee29

Hi Dee

Anxiety/Depresion is so awful and you have suffered for so many years, but you are coping so well with what life has thrown at you. I have tried and tried to overcome it but I still hang onto my Sertraline at 25mg which is my comfort blanket I suppose. The PTSD which I also suffer from has not been so bad over the last 20 odd years, but, I find as soon as I taper off the Sertraline back it comes again with a vengeance which is always accompanied by multi coloured nightmares so stopping at 25mg for the time being. Like yourself this was caused by some really bad life experiences and has taken me a long time to very nearly overcome it, so I do understand where you are coming from. I have an absolute melt down if an invitation comes in the post, weddings especially I get so nervous attending. I feel awkward and never really enjoy social situations, but I love being with a small band of people who I know, but I do make myself go to weddings and my hubby is very good and knows I get nervous. I am with you on the accelerated heartbeat rate, my specialty is feeling as sick as a parrot before I go out - joy!!

With the PMR so far on the steroids I have been completely OK, no maniac running around cleaning everything including polishing the dogs! But still getting a lot of pain in my legs especially even though I am taking it a lot steadier than I was at the beginning of diagnosis, I thought I would be able to carry on with my life as usual but soon found out to my cost you just cannot, you have to pace yourself. Taken up reading in a big way that makes me sit still!! Take care XXXXXX

Dee29
Dee29
in reply to saffron52

Hi again Saffron52 :-D

It looks like we have both been through the wars a bit and are looking out the other side which is HUGE and we should be proud of ourselves for coming so far, no matter how long it took in getting there! :-)

After yesterday I am so bloody proud of myself I was grinning to myself for ages afterwards! (even though I felt like I could sleep for a week!) We (my Partner, my Mum and myself) went to the River Festival which was absolutely packed with people every way you turned and I didn't panic!! :-D OK, I felt pretty uncomfortable a few times but I dealt with it. To be honest I HAD to deal with it, my Mum has Dementia and is that stage where she gets a bit flustered now and again so most of my attention (and my Partner's) was on her which helped me think less about my situation....anything that helps eh!

I now have a mental picture of you running around with polish and duster trying to polish your dogs! lol Will you do mine if I send them around? ;-) Seriously though, I haven't felt the need to rush around doing anything since taking Pred, maybe dosage is not high enough as it doesn't seem to be helping either....or maybe it's because I've always been a HUGE reader and have loads of "new" books to read :-)

Take care

Dee xxx

saffron52
saffron52
in reply to Dee29

Hi Dee

Well done I bet you are proud of yourself it takes some doing not panicking in such a large crowd and having your Mum to look after as well. Though our paths have not been easy I always think that people who have suffered with symptoms like ours are usually very nice kind people at heart and have a tremendous sympathy for other people in different situations. So though the journey I have had has been rubbish sometimes I would not have been without it in some ways as it has made me the person I am now - a lot better person (I hope).

Angie XXXXXX

PS Doggies see me coming with the polish and scarper, bless them, one Rottweiler, one crossbreed Lab/Collie and one Pug/Cairn (Hells Angel!!)

All of this can be quite worrisome. I have found the days I just go with it and try not to focus on the illness (hard I know) I do have easier days. I became a little anxious and very impatient. I found a homeopathic medicine Nerve Tonic and that is helping a lot. Anxiety is down and patience level is back up. Dr. wanted me on zoloft but after reading the side effects I decided I would rather be impatient then run the risk of one of the awful side effects that can happen with this powerful drug. You found the most excellent place to be on this board. All of the wonderful comments have helped me handle all of this so much better. There is lots of great info. here on this miserable disease.

Dee29
Dee29
in reply to Linny3

Hi Linny3

Thanks for replying :-) I do try not to focus on the illness but as you say, it's quite hard to do, especially when the pain levels are so high you cannot ignore them. I'm glad you found something that has brought your anxiety down and patience levels up :-)

Unfortunately, because of all the other meds I take I have to be careful what I take with them, I can't even take over the counter cough medicine! :-s

I'm realising that I stumbled on a great board when I found this one, everyone seems so friendly and helpful and it's nice to have "someone" to share the journey with instead of being alone as I would have been had I not found this site!

Thank you to everyone so far!

Hi Dee,Thankyou for your reply,l hope that you will get some relief from the pain you have soon,l was lucky the prednisolone worked well for me,although it did cause weight gain and a very rounded face,l am down to 3mgs now but still have some swelling low down at the back of my neck which l try to hide by keeping my hair shoulder length. I am also going to the river festival on Sunday,l hope that the weather will stay fine but not too hot ,it is also the town carnival tomorrow and l am helping out serving the tea and cakes etc with the WI .Kindest regards,l hope you have a nice weekend.

Dee29
Dee29
in reply to Grants148

Hi Grants148

So far no relief as such but that maybe my disabilities rather than the PMR causing the pain. You're doing great in getting down to 3mg, does the swelling in your neck not go down at all??

So you are local to me!! I hope you had a great day yesterday at the River Festival, we decided to give it a miss and go somewhere else as we were disappointed in the way that everything had been altered. The Dragon Boats were squeezed right down the very bottom of the Festival Site and when we tried to find where the Newfoundland Dogs Rescue Display was being held we had hell of a job to find it as it was not made clear on the map where it was being held!...we ended up missing most of it :-(

On top of that my poor Mum nearly ended up under a bus on the Bridge due to the ramp that was put down to assist mobility scooters/wheelchairs/pushchairs, etc onto the road so you could cross actually moved as Mum's scooter front wheels went on it, she panicked, gripped the forward paddle and went flying into the road, fortunately we managed to prise her hand off just before she went under the bus....she missed it by about a foot at most! An email is going to be winging it's way to the Organiser's in a few minutes to complain about the ramps so that hopefully it won't happen again to anyone else. Sorry to waffle on, I hope you are feeling well today and did not overdo it yesterday.

Take care x

Hi Dee,thank goodness you were there with your Mum,it is very dangerous to have ramps that move.lt was very busy on Sunday and although it was lovely to be by the river the sun was full on which made walking rather tiring,l wished l had taken my small parasol type umbrella with me ,last used on my grandsons school sports day.l live in Houghton Regis and l often go to Bedford,l love the river.l grew up in Cambridge and l really miss the river there.l am sorry that you have pain from other disabilities,PMR does respond well to steroids and l am fortunate that l have been able to taper down to 3mgs. The swelling at the base of my neck is probably caused by the steroids,l thought it might go down as l am on a low dose but it has not changed much .l hope you and your Mum have recovered from the scary near miss with the bus.All the best Dee,,l hope that something can be done to help with the pain you have,please let us know how you get on,Kindest regards,Patricia xx

Dee29
Dee29
in reply to Grants148

Hi Patricia

Yes it was very hot on Sunday and I can imagine how tired it made you walking in it.

Believe it or not I grew up in Houghton Regis!! My Mum only moved from there a couple of years ago to be nearer me as it is a bit of a trek from Bedford to HR, especially if there is an emergency! I grew up on on Tithe Farm Road at Bedford Square end, I wonder if we ever came across each other?? Maybe we could meet up for a coffee when you are in Bedford sometime although we do come to HR every 4-6wks to do my Mums old neighbour's garden for them (well my OH does), maybe we could meet then?

I am still not responding to Pred all that much which is dis-heartening to say the least and

things came to a head this week, fatigue is at an all time high along with the feeling that I have been run over by a steam roller. Headaches are a daily occurrence but do not last long, so I went to see a GP about it thinking that they would increase my Pred dosage. I could not see my own GP so had to see another one who told me that she could not interfere with the dosage set by my Rheumatologist and then proceeded to give me the once over and diagnosed a chest infection. One weeks anti-biotics and an inhaler have been prescribed, once finished AB's I have to go for a Chest X-Ray and a Spirometry test. I was/am worried about taking AB's on top of my other meds and asked GP if they would be OK, she said that I had no alternative but to take them and hopefully it will be OK :-O

It feels like a never ending fight and it, along with other crap happening in my life right now which is stressing me out big time (yes, I know that is not good for me and could be causing a flare up but what can I do to stop stressing??) is really getting me down which is making me fight my Depression just to keep myself from sinking.

I'm trying to stay positive and am trying to find a balance of rest and doing things but as you know, it's not the easiest thing to do is it.....have you any advice on this that I can take?

I hope that you are enjoying this weather (I love it!) and are feeling well in yourself

Hi Dee,thank you for your reply,l did wonder myself if we might have met or passed each other by ,even more so if you lived in Tithe Farm Road,l live in Dunstable Road,just off Cemetery Road and have lived here for 49 years.H/R has changed a lot in during that time.l would love to live nearer Bedford ,easier to get to my beloved Cambridge from there via the X5, but as l have a son living in Dunstable l like to stay near him.My two sons went to Whitehead school,that would be well over 40years ago.l would love to meet up ,especially if you come to HR quite often.l am sorry that you are struggling with things that are happening in your life ,that certainly won’t be helping you,and l am sorry that on top of it all you have a chest infection,l do hope things get better for you soon.l wish l could help you ,no wonder you feel depressed.l can only say that l care and if you need a friend to talk to,we really must meet up, who knows,we might even recognise each other! A nice walk by the river can be very calming,l could meet you in Bedford.l have never actually met anyone else with PMR,this forum has really helped me,it is not easy to try and explain the illness to my family and friends.l am sorry that the steroids are not helping you ,you probably do need a higher dose,especially with the stress you are going through .l do not know how we can arrange to meet,l could tell you if l am coming to Bedford soon and you can tell me where to meet you there,l will look forward to that as l am sure we have plenty to talk about as you grew up near me.All the best,l hope you feel better soon and that your chest X-ray and spirometer test are OK ,it is going to be really hot tomorrow l,ll stay indoors l think to keep cool.xx

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