I am two weeks into gca and pmr examinations. I am on 50 mg prednisolone and all the etc. My Mum has both so I guess that is what they are thinking

Thank u, I guess I was just having a bit of a panic attack! Went to my docs with headache and had a blood test and was phoned a few hours later from the hospital to tell me to take 60mg predict straight away. Two weeks later I have had 3 hospital apps and a biopsy and bone scan booked? Guess it just all happened too quickly

Thank u for your reply. I went to my docs with a headache and I had a blood test and 4 hours later had a call from the hospital telling me to take 60mg predict straight away. Two weeks later I have had 3 hospital apps and apps for a biopsy and a bone scan, guess it was all a bit quick for me

Thank you. My consultant has concerns that the biopsy is booked for May but unfortunately that is the waiting list in my area. I agree that I have no complaints about my treatment and the nursing staff are so friendly. Once again thank you for your input

I have dropped the pred down to 40mg on the advice of my consultant but tonight I have pain in my hips and arms but the worrying thing is the pain starting in my temple again 

Angela - Two weeks at 50mg has probably not been long enough for the steroids to get complete control over the inflammation and maintain it.  The BSR Guidelines for the Management of GCA suggest 4 weeks at the starting dose.

If it was me, I would try one of two things: either go back to 50mg for another couple of weeks; or increase to 45mg and if that relieves the pain at least you have reduced by a small amount.

Don't expect to be totally pain-free down through the doses - there are only a few lucky people who manage that.

It is quite normal to expect some steroid withdrawal pain immediately following a reduction and this can subside after a week or so, but if the increased pain starts several days after the reduction and continues to build then this can be a sign that the inflammation is not quite under control.

At least, I'm glad your head pain hasn't resurfaced - my rheumy told me to contact him immediately at the first sign of any returning head pain. 

Finally, do have plenty of rest at this time and especially around the time of any dose reduction - if you overdo things because you suddenly feel better, PMR will bite back.  Hope you feel better soon.

Thank you for that but my head pain has now started again, my head once again is feeling sore to touch and the pain is getting worse, sorry to moan x

Angela - then you need to up the steroids back to the starting dose and contact your consultant as soon as poss.  If you experience any sudden problem with your vision, such as pain or blurring, then go straight to A&E. No need to apologise for moaning - that's what these forums are for.  Good luck, and do let us know how you get on.

Thank u again for your support. I have put a call in to my consultant but it's an ansaphone so I will get a get a call back between 1.30 and 4.30 tomorrow. I understand what you are saying about vision because I have been 10 years with my mother but not sure whether to take 50 or 40 tomorrow, any ideas? 

 

Angela - because of the returning head pain, you would certainly be wise to increase back to your 50mg starting dose tomorrow in order to protect your eyesight - 40mg is obviously proving insufficient to control your present level of inflammation and leaving your eyesight at risk.  Your consultant may even suggest increasing to a higher starting dose when you speak with him tomorrow.  The recommended starting dose for GCA is between 40 and 60mgs, with some patients requiring even higher doses.  Hopefully if your pain improved very quickly on the initial starting dose of 50mgs, then that will again be sufficient.....you may just need to stay on it for longer this time.  Do let us know how you are tomorrow.

Thank u once again, my starting dose was 60mg and I thought I was doing so well but I know now I was not. I am hoping to go back to work tomorrow but to be honest the pain is worrying me

One of the top groups in the UK (Kirwan in Bristol) keeps their patients on 60mg for 4 weeks before reducing to 50mg - and then keeps them at each dose for 4 weeks between reductions so it takes 6 months to get to 20mg. They find this reduces the rate of relapse to a much lower rate than most reduction schemes. The most recent research shows there is still inflammation there even after that 6 months so higher for longer is more likely to be the recommendation than lower doses.

And try to get out of the thought "I'm doing well, I'm reducing my dose". You aren't failing or doing badly if you need pred at a higher dose for longer - you need it for as long as you need it. I know about the side effects being horrid, I have the t-shirt, But the side effect of not adequately treating GCA is even worse.

Angela, then if you started as high as 60mg and have gone down to 40mg in just over 2 1/2 weeks, there is your answer for the unfortunate relapse.

I can understand the returning pain is "worrying" but do try not to get stressed about it as that won't help with PMR and GCA - they love stress!  Just hang on to the fact that you did start to feel better after commencing treatment and you will do so again once you are back on the correct dose that controls the inflammation for you, for now.

If you have already increased back to 50mg this morning then hopefully the head pain at least will start to improve in the next few hours - providing, of course, that you did in fact feel well at 50 before decreasing to 40?

Oh, and I do so hope you haven't gone to work today - your body needs complete rest, especially at this stage, in order to allow the steroids to do their job.  Good luck!

Once again I thank you for your support. I have had a call today and have to go back on 60 mg pred. I have to go to hospital tomorrow for further blood tests and my consultant has made an apt for me on Friday. I really appreciate all the support you are giving me

Angela - it's a relief to hear from you and more of a relief to hear that you have been advised to return to your starting dose so at least your eyesight is being protected.  Hopefully now your consultant won't reduce you so quickly this time, and if you are someone who had raised blood markers at the outset, then these should be repeated before each and every reduction at this stage to use as guide along with your symptoms.  This worked very well for me - if the blood tests were raised the reduction was postponed.  I do hope you soon start to feel much better again on the increased dose. 

I realise that I have been talking about myself non stop when you have obviously been through it yourself. I do hope you are doing well now! I have so appreciated being able to talk and I'm beginning to think on a more level head now. I was so strong going through it with my Mum but I think I went a bit AWOL when I realised that it was me now!

I have had a call back from my consultant, I have to go back on 60 pred, go for blood tests tomorrow and see him on Friday. Thank you so much for your support 

Sorry I realised I replied to you twice?! 

It is one thing dealing with your parent and "being together" for them and being faced with a life-changing illness yourself. You have to sort out how to live your life whilst feeling decidedly under the weather yourself - and since no one can see it is all the worse.

Don't ever feel you have to apologise for talking about yourself - that's why the forum is here, you are centre stage when you need it but later it will be your turn to offer your sympathy and advice to someone else. Best of course is when someone has come out the other side like MrsO and stays around to say "I was this bad - but I'm fine now!"

Do keep us up to speed on how you get on with the rheumy - hope he's learned something.

Angela

Sorry I realised I replied to you twice?!

No need to apologise - just blame it on the steroids.  I do, and I've been off them for nearly two years!!    And anyway it made me chuckle!

And don't apologise either for "talking about yourself non-stop" - as Eileen has said, that's what this forum is all about.  We're only too happy to offer help and advice from our own experiences, even if we have to repeat ourselves many times, because we have been there and got the t-shirt, and are the only people who really understand what other sufferers are going through, especially those newly diagnosed and feeling alone.  Even though you are already familiar with PMR/GCA following your Mum's diagnosis, it is still a shock to suddenly succumb yourself.  

I do hope you are having a better day on the higher dose, but don't go overdoing things when you feel better - the steroids are not curing the illness, they are just damping down the inflammation to relieve your pain.

I was Ditsy before this, at least now I have something to blame! Going to the hospital today I felt I was walking through wet cement but tonight I feel as though I have only been kicked by one donkey not two! At least I'm getting my sense of humour back. Have upped the pred to 60 mg and I'm now feeling I won't need Botox for a bit longer as my face is filling out the creases! Go back to see consultant on Friday, thank u all again for your ever helpful support!

Please read my reply to Mrs O it was meant for both of you

Yes - hasn't this "new" format made things complicated when all you want to do is reply to everyone involved!

It's unusual to hear GCA people talk about the wet concrete - PMR alone can make you feel as if you are wearing concrete pyjamas!  Now I've lost a load of the weight I put on I have lines - hmmmmm! The best side effect of pred was definitely smooth skin and few wrinkles! This time I hope the rheumy is a bit less gung ho and lets yu get to feel a bit better before wading into the reduction. Good luck.

Ah Angela, you've discovered one of the benefits of steroids - cheaper than Botox too!  So glad the increase has already relieved some of your body pain....I do hope the head pain has been kicked into touch as well.  Fingers crossed that you have a more positive/knowledgeable experience with your rheumy on Friday.

No nasty injections either!

Quite, Eileen!  I don't understand why people put themselves through that - better just to stay away from the mirror!  Just heard some great news from my dear friend who had a stroke some months ago though - she is about to have Botox treatment in an effort to see if it will give her some mobility back.

Now I've get to get off this PC and out of my PJs - don't think my friend would be amused if I turned up for our usual weekly riverside walk like this, never mind the wrinkles!

Saw my consultant yesterday,  and he's said that my bloods are ok he's now reviewing my case. Dropped the steroids down to 50 again and referring me for a brain scan. I didn't mention my family history (maybe wrong).

Does that mean he's one who thinks you can't have GCA with normal bloods? I do hope not - we were discussing that last night in a meeting. Is it an MRI (noisy) or a CT scan (not noisy)? Hope it turns out fine.

Hi again Angela - I have been wondering how you got on yesterday.  If you're blood results were raised at diagnosis and are now "ok", following 60mgs Pred, then it would be expected that your Consultant would suggest trying a reduction.  However, you haven't mentioned whether your head pain has improved as well - I do hope so?  However, if it is GCA then a reduction from 60 to 50 after less than a week is a bit fast - I hope he hasn't suggested reducing to 40mg in just another week or so as that could leave you back where you started.  I do hope the referral for the scan comes through quickly and that all is well. 

I have to reduce to 50 until I go back next Friday and see him again. Pain all eased again now

Obviously it does! It's a CT scan and thank you

now i just wrote a long answer and now its gone , b internet lol well i only started on 25mg prednisone , came down slowly over 2 years , up and down , but still determined to get off the stuff , will continue 1/2 mg till i get clear , wont see the doc till my repeats run out , then a bloodtest again , , getting my energy back now , not so tired , and not so exhausted , but cant walk far , lol but then im 85 in july so i can fall back on that excuse ,, i know its hard to think positive , but thats my goal just to get off this medication , im sure its the super juice i make myself every day that helps lol if i could afford the people at the health food shop i would , but they cost too much  ,hope you get some relief and get better soon , 

Hello, I think you are doing well by the sound of it? U are coping very much on your own?  Don't feel on your own x

You can talk to me anytime x

Hello nanna, like Angela, I too think you are doing incredibly well, especially in reducing your steroids so slowly.

Angela's advice not to feel on your own reminds me that a support group in the North East of England have a DVD available 'you are not alone'.  Also there is now a book available written by a past sufferer and trustee of our national organisation about how to survive PMR/GCA.  Both have very active forums too.  I can't place the links here as the message will disappear for a long time to be moderated but if you click on polymyalgia rheumatica in the line in red at the top of this page it will take you to the home page where you will find a link to the other website addresses.

Keep super juicing, nanna!

Hi MrsO,

I see you are off Prednisone now for two years. Just wondering how long were you on the steroid before being able to go off?

 

Hi Darlene

I was on the steroid Prednisolone for 5 1/2 years but before that panics you I should point out that I spent a year undiagnosed with several months in bed in agony and travelling to my rheumy appointments by ambulance and wheelchair.  I did spontaneously recover towards the end of that year but it was short-lived and it returned along with another bundle of horrid symptoms.  I was then finally diagnosed with both PMR and GCA.  Because my PMR was left undiagnosed and therefore untreated, I had succumbed to the linked condition GCA - whereas around 3 in 10 people with PMR are at risk of GCA, that risk rises to around 7 in 10 for those whose PMR inflammation is not controlled.  Consequently, my steroid starting dose was high at 40mgs a day to control the inflammation and protect my eyesight.   I did have a fairly textbook journey down through the doses until I reached 5mg and there the 'fun' began again.  Knowing no better at the time I followed my rheumy's instructions to continue with my then 1mg reductions but when I hit 3mg I was once again unable to walk.  Was then increased to 10mgs, slowly decreasing back to 5mgs where I was advised to remain for 5-6 months.  With hindsight this proved excellent advice since the 5mg stage can be a bit of a sticking point for many it seems.  I then had the luck to come across a gentleman in Sweden on this forum who posted about his difficulties trying to reduce from 5mgs and his final success when he decided to start reducing on every third day rather than every day.  Many of us have now tried this method or something similar and are finding it works.  I went even slower than a snail's pace from 5mgs, reducing in just 0.5mg decrements and just on one day of the first week, two of the second, three of the third etc taking about 7 weeks to reach the new dose every day, eventually getting to zero.  Eileen who posts here is also following a similar regime after struggling previously and it's working for her too.

I do apologise for a rather lengthy reply to your short question but felt it necessary to explain why it took me so long to get off the steroids but we are all different and it's a case of finding what works for you.  But really there is no race and the slower the reductions, the better.  Plus when you reach around the 5mg dose there are unlikely to be any side effects from the pills - except, of course, the good side effect of losing the steroid-gained weight.......even if the wrinkles are visible again!

Thank you but I'm now feeling a bit confused by it all. Have dropped the pred to 50mg and the breathlessness has eased but the consultant is now confused because my bloods were ok. I don't know what to think now, maybe have to wait for the brain scan

Also went back to work today but it was hard to focus 

This paper covers patients with normal ESR and one of the authors is Dasgupta from Southend, one of the UK authorities on GCA:

"Giant cell arteritis with low erythrocyte sedimentation rate: Frequency of occurrence in a population-based study

Carlo Salvarani, and Gene G. Hunder"

Sometimes the CRP will be raised but there are some patients who never have a "raised acute phase reactant" (ESR and CRP). You could mention it to your consultant - he may never have seen it.

The bottom line however is that GCA remains a clinical diagnosis - i.e. on the basis of symptoms and response to pred. There is not YET a 100% accurate test, however much any doctor would like there to be.

Angela, I'm not surprised you're confused, not helped by a consultant who needs a bit of educating.  There are many PMR/GCA sufferers around who never have raised blood test markers with these illnesses, and those sufferers who do have raised blood test markers at diagnosis will mostly see a very fast return to normal readings, especially on a dose of 60mgs.  

I'm glad your breathlessness has improved, but have you had any improvement in your other symptoms as well?  I hope at least the consultant has requested the scan as a priority?

If it were me, I would be asking my GP for referral for a second opinion, even if that means a private appointment if affordable.

Angela, is it not possible for you to have more time on sick leave from work - you realy need to have lots of rest at this time and on this high dose to allow the treatment to really get control over your symptoms.  Any stress will not help.

 

GCA is covered by disability discrimination law and both your occupational health department and union should be included in all this, especially while you are on high pred doses - they alone make it hard to focus, and the worry of chronic illness adds to it.

You need to rest - only when you rest will your body be able to concentrate on getting better. We have had a few ladies with GCA who were still working - only when they took some time to rest did things improve. One took about 6 or 7 months off - she then had a staged return to work, has restricted shift demands and is back at normal work with the Border Agency after 2 years altogether. But she only improved once she got OH and the union onside and they were great.

That is such a coincidence, I used to work in the Border Agency! Unfortunately now I work for a small business where I am needed! I have also visited my dentist and hygienist today and they say I have such an infection in my mouth and throat that they would only give me a prescription to help me and would only ask me to get to get back to them when when I have my results. I am feeling low

Mrs O, I am feeling so tired at the moment. I have responded to Eileen which is so coincidental but I went to my dentist and hygienist today and they said that my mouth and throat were so sore that they wouldn't treat me but gave me a prescription. I am so tired, is this normal?

Hello Angela - oh poor you.  Steroids can cause a sore mouth and throat, but also when on high dose steroids it's quite easy to pick up infections.  I hope whatever medication the dentist has given soon relieves the soreness.  Meanwhile, have a look at your toothpaste, and if it contains Sodium Lauryl Sulphate (SLS) then switching to another may help.  SLS is known to aggravate some people's mouths.  I use Sensodyne ProNamel as recommended by my dentist. Also, if you don't already eat it, have a 'live' yoghurt each day.  Manuka honey can also help - it's good for the immune system which can be depleted by the steroids, and has lots of other health benefits.  Unfortunately, it is expensive, but I am never without it and have a teaspoonful every day.  If you do buy some, make sure the letters 'UMF' (Unique Manuka Factor) are on the jar as that guarantees the antibacterial factor of the product.  I have Factor 10, and sometimes Factor 15 in the winter.

Yes, unfortunately, tiredness is part and parcel of PMR, and probably one of the major gripes among us sufferers.  As the steroids get control over the inflammation and you slowly reduce the dose you will gradually start to feel better.  This is why we say to give yourself plenty of TLC and rest at this time - although you might be needed at work, it is you who is in most need at the moment and if you continue to force yourself to work it will take longer for the steroids to do their job.  Please try and put yourself first.

Angela - it may be a small comapny and they may need you - but believe me, no company ever put up a memorial saying "She sacrificed herself for the good of our company". You must come first, second and third - you need rest and TLC for the moment. 

PMR causes fatigue, it's part of most autoimmune disorders, but my 14 year old granddaughter is on 60mg pred and can sleep for Britain at the moment - even on her school desk. So it can be both.

Aw bless her you must be so worried

I realise what you are saying but until I'm diagnosed I'm unsure what to think? I know that I sound weak because I have always been a strong character to my family? I've looked after my Dad, my Sister and my Mum but  this is flooring me

It does most people until they get their head around it. Some seem never to do so. You would also maybe be surprised to find out how many people with PMR or GCA have been active and "doing", "coping" (I hate that word!) people whose families depend on them or assume they will do it all.

But if you are too unwell to work, you are too unwell to work. Being on high dose pred messes EVERYTHING up - your brain doesn't work too well, it is a massiv insult to your body, you are so tired you can't think straight but you can't sleep properly either. It isn't the same as taking a couple of paracetamol for a headache.

Saw my consultant yesterday and he has said that he wishes he could have seen me before I started on the pred, also said my Dr did the right thing.My crp levels have been normal since he's seen me but there is a protein in my blood? He's dropped me down to 45 for the next week and 40 for the week after. My biopsy on Weds and my next apt on the 23rd. Hopefully brain scan in between. Thank you

Don't quite understand that - CRP is a protein in your blood. However - first step achieved. I do hope you have no trouble with the reductions and it all goes well.

All the best for the biopsy - just a warning: someone complained on another forum about numbness around the site of the biopsy afterwards, this often happens but she hadn't been warned about it and was annoyed at that. So here's a warning ;-) 

Eileen

Thank for that I will be aware 

Mrs O, I really don't know what to think now? I have my biopsy on Weds but because of the timescale I think it won't prove anything? Also they sent me an apt for the brain scan 1 hour before the biopsy in a different hospital! I am so tired of it all but I know that it has to be done

Angela - I know it must all be so confusing especially when the appointments arrive for the same day within an hour of each other AND at different hospitals!

At this moment, I would feel that the brain scan was the most important of the two - you are already being protected with high dose steroids if it is GCA and in any case you have really been on steroids a little too long for the biopsy to prove effective, ie any enlarged cells they are looking for will probably have resolved due to the high dose steroids.  Plus biopsy is not 100% reliable.

If it was me I would ring the hospital where the biopsy is taking place and explain the situation - they might be able to slot you in a bit later that day or the next.  Also, ring your consultant's secretary and explain the situation.  

Hopefully all will prove well with the brain scan but if anything was to be found I'm sure you would hear almost immediately.  If all is well that could be sufficient proof that you have GCA.

Hang in there - at least you have the reassurance of being investigated with a brain scan.  Try to relax as much as you can (mind and body) although I know it's easier to say than to do, but important nonetheless in your recovery.

Here we at least get to go and make our own appointments to avoid this sort of daftness! It happens so often - as long as they don't get iffy at you missing one of them!

If it were me I'd opt for the brain scan too to be honest. Ring the hospital and ask to speak to the consultant's secretary and ask which he feels is the more important - after a month on 50+mg pred I really can't imagine there will be much to be found in the biopsy and you said your consultant was a bit concerned about that long wait. It all comes down to whether he will treat by symptoms in the abscence of a positive biopsy - which he should do anyway.

Sorted, my brain scan is tomorrow at 12 and my biopsy is Weds, there was a cancellation for tomorrow. Hopefully get results a week Friday with my consultant. Thank u both for your support, I am very grateful

Brilliant! Good luck and hope it all fits in nicely! Come to that - hope they find a brain... ;-)

No chance of that!

That's fine then - we won't have to chuck you out of our club ;-)

Ha ha ! No way now!

Perfect, Angela.  And I hope it all turns out perfectly too.