Naive question - should I be pain free on Pred? - PMRGCAuk

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Naive question - should I be pain free on Pred?

Fieldofdreams profile image
67 Replies

Dear Friends,

Please forgive me if this has appeared on the posts. I cant find it anywhere and this is my third attempt at writing this post and not forgetting to click 'post'! Diagnosed 8 weeks ago with GCA and on 60 mg Pred. My rheumy has created a taper every 2 - 3 weeks of 10 mg per time. Now down to 35 mg but supposed to be down to 20 mg by yesterday! I have had to do some work and travel and my GP advised it was too much so went against advice and stayed at 35 mg.

I have head pain every day, obviously not any where near as before I was diagnosed. My temples hurt and my jaw and what I call 'hot niggles' on my scalp and my eye jumps. Some days, when I am tired, by 6 pm my jaw would rather not chew because it hurts and so I resort to soup. Most days I take myself off for a 15 min relax and breathing session if I am not at home. If I am at home I try to get at least an hour lie down. Getting more sleep than ever - but it is interrupted 2 to 3 times a night by pred insomnia.

Mainly I wold like to know form other GCA sufferers if the head pain ever goes away or if you are conscious of it most of the time. The only day I have felt 'pain free' was last week when I had an allergic reaction to eating grapefruit and i took 3 anti histamine tables to calm the red rash and welts that were over my entire body (I am allergic to oranges but now it seems grapefruit too). Pred and antihistamine mix were great!

Yesterday I had a dreadful day. I went from 35 mg to 30 mg and felt someone had pulled the plug out! I had to work for 1.5 hr in the morning chatting to a group of children, by 12 noon could barley walk back to my car and spent the rest of the day in bed with raging head pain for the rest of the day and evening. Today both temples throb, which is unusual as its usually predominantly my right as that was were the worst swelling was (seen on ultra sound). My body feels week, my heart feels like it is going to pump out of my chest.

I am fairly upbeat and optimistic as I know I am one of the lucky ones compared to some people who are suffering much worse than I am, but last night was the fist time where I could have quite happily sat and sobbed - about this illness that just keeps on giving - and the work/life changes that we have to make.

Thank goodness for my two cats.... cuddles in abundance!

So from my cats and me, does the head pain/niggles ever goes away or are conscious of it most of the time?

thank you in anticipation.

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67 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Fieldofdreams,

Oh dear, you should feel better than you do. Not neccessarily 100 % better, but not as you are.

Too fast a taper, as your sensible GP has realised, but I fear, unfortunately you have already gone passed the dose you actually need. Although the tapering regime your Rheumy has initiated is recognised, very often it’s just too quick. I think for Initial dose you need to be on at least 4 weeks, and then reduce either by 5mg every 2 weeks, or 10mg monthly. I found I could reduce every 3 to 4 weeks at high doses, BUT only if I felt okay and my blood markers backed that up.

Plus you are working, which obviously makes everything so much more difficult.

You really need to speak to Rheumy and advise him of problems, if you can’t speak to him then GP. Also you need to consider increasing your Pred, if only short term until you can get advice from one or the other. And have a complete rest this weekend.

Fieldofdreams profile image
Fieldofdreams in reply to DorsetLady

Thank you so much Dorset lady I think from my previous posts and your advice and advice from others that my initial taper from 60 to 50 was too soon and I feel that the swelling is still there full stop I'm going to try and get an appointment with my GP on Monday and have a good talk to her and then see if I can get to see the Rheumy as well I have a full rest this weekend planned and a quite a week next week.

The head pain of course just adds to the worry of the swelling and then potentially I get a stress headache which confuses me then between the GCA and added stress of doing more damage. Ah. What a journey but thank goodness for your advice and this forum. Thank you so much for reassuring me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Fieldofdreams

Just to give you an idea of different doctor’s approaches -I was on 80mg for 2 weeks (okay I’d lost sight in right eye- so different scenario), then when Ophthamologist was sure left eye okay was reduced to 60mg - which I stayed at for 8 weeks! Then reduced to 55mg for 3weeks. From then, every 3-4 weeks (usually 4) reduced - usually 5mg a time, the odd occasion 10mg.

Plus I wasn’t trying to hold down a job at same time.

Please let us know what happens at your appointment.

Conundrum profile image
Conundrum

Good Morning Your Cats and You. I am fairly new too, so not much experience yet but I cannot but agree with DL's comment. I was put on 45mg but was still getting similar symptoms to yourself after 2 weeks, so was put on 60mg for 2-4 weeks tapering slowly 5mg over a month, at a time. Have been on Pred about 5 weeks now and feeling (very odd) but the pain is much better but not completely free. At this early stage I think you should take some sick leave, you are quite poorly; but I know not always as easy as it sounds. Take everything more slowly, hope you feel better soon. X

Fieldofdreams profile image
Fieldofdreams in reply to Conundrum

Thank you so much Conundrum for your lovely reply. I was able to take some time out at the Beginning but unfortunately I'm self-employed and some of my commitments in my diary I have been able to get rid of but some I can't and I don't have the financial acumen to be able to stop work. So I'm in a tricky juggling situation but all the time and showing that I can put my health first.

I think DL is right and my first to take us we're too soon. What a journey we are on but there is always a sunny side to every situation.

Fieldofdreams profile image
Fieldofdreams in reply to Fieldofdreams

Please excuse my typos. I'm using voice recognition and sometimes it makes mistakes that I miss . . I meant to say my first two 2 tapers were too soon.

Primarose profile image
Primarose

I was still on 55mgs after 8 weeks from the on-set of GCA, I went down by 5mgs each time. I did not have any head pain except for a week after the TAB. I actually felt quite lively. My mistake was to try to do the things I had previously done which eventually exhausted me so I had to slow right down.

I had to change my life style dramatically.

What a boofuls puss cat.:-)

Fieldofdreams profile image
Fieldofdreams in reply to Primarose

High primrose I think my first taper was too soon and also my second so I think now I'm in a funny position of not knowing how I should feel. I'm going to go and see my GP on Monday if I can get an appointment. Thank you for your experience I think that was a better taper than mine and I hope you are feeling much better now. X

Primarose profile image
Primarose in reply to Fieldofdreams

You are really going through it at the moment. You were following *expert* advice. I must admit that I did stay on 60mgs longer than was first advised but my symptoms had not stabilised.

I feel more normal each day thank you.

Your pusscats need a cud!! Mine don't like cuddles but I do get the odd head butt.:-)

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

The word you need is EMERGENCY. Which should mean an immediate result - and be firm. Make the receptionist check if they try to fob you off.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

Thanks PMRpro! EMERGENCY it is. The GP that diagnosed it was a locum and she is now there for 10 months on maternity cover so I want to see her. She is great! She actually asked the secretary to get me to come in two weeks ago when she hadnt seen any reports from Rheumy as hospital hadn't sent them through! She is young, and her husband is a surgeon who actually does biopsy for GCA and is well versed on it! How lucky was I? She diagnosed within 5 mins of my first visit. needless to say she has had a big bunch of flowers from me :)

Grants148 profile image
Grants148

Dear Fieldof dreams,l am sorry that you are feeling so unwell,l cannot add to the advice given from Dorset Lady,but l hope that you will feel much better after following her advice.l love the picture of your beautiful cat.

Fieldofdreams profile image
Fieldofdreams in reply to Grants148

Thank you for your lovely message Grant. my cat is called Oliver and he was a little stray that came into my garden he has David Bowie eyes one blue one green and he's a very sweet little boy who gives lovely cuddles

SheffieldJane profile image
SheffieldJane

I agree totally with DorsetLady ( as always). You really are not taking enough Pred to control your illness and it should be possible to feel 100% better than this. We never feel totally normal and have to help things along by pacing activities and having lots of rest. If you don’t look after yourself Fieldofdreams, your body will force you to. It will just break. I cannot understand how some of you can continue in demanding jobs. However, I do remember standing at the foot of a flight of stairs in the Law Courts ( where I worked) stealing myself for the climb ( without thinking that this is odd). It is amazing what we put up with, until we don’t. Then we look back and think how and why did I do that?

Fieldofdreams profile image
Fieldofdreams in reply to SheffieldJane

Thank you so much Sheffield Jane I think I need a good talk with my GP and rheumy because I don't feel confident that the pred is enough and I'm now becoming stressed that I am continuing the damage because the swelling is still there.

I can identify with the look at the staircase at the law courts yesterday I had to talk to a group of school children for an hour and a half which was wonderful but exhausting I went back to my car to go to meet a friend parked in another car park and then couldn't face the walk from the car park to the coffee shop where I was meeting her it was just too much and I had to go home. Spent the rest of the day in bed feeling fatigued fed up and that I had let people down full stop but it's not going to defeat me and I'm always looking for the sunny side. With warmest wishes.

PMRpro profile image
PMRproAmbassador

If you were diagnosed only 8 weeks ago and started at 60mg IMHO you should only be thinking of MAYBE reducing for the second time, at most 3rd time, now and should still be at about 40mg. That reduction was too fast - reduce quickly if you must but ONLY after you have achieved control of the original symptoms and, if applicable, the blood markers are falling significantly, It doesn't sound as if that happened. Your rheumy is obviously terrified of pred, he should be terrified of not using it properly - which he isn't. YOu may not achieve total freedom from pain and symptoms but you should be at least 70% better and even at that, that usually means you need more to get there. Only then can you lower the dose.

In your place I would go back now to where you felt better - and at least to the 35mg you were on before yesterday - and on Monday I would get an EMERGENCY appointment with your very sensible GP and tell him this isn't going to work and ask for his backing. If you haven't already done so and in case he isn't familiar with it show him this paper:

rcpe.ac.uk/sites/default/fi...

Their regimen works and avoids excessive flares. You HAVE to be sure after every reduction that things are still at least stable - you shouldn't feel worse at the end of a reduction than you did at the start.

And really - working, chatting for an hour and half to children???? That would leave me shaking at the end and I'm not GCA-sick. I think you need to accept that for the moment you are ill - and need to behave like a poorly person. This too will pass - but only if your body gets a chance to heal itself.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

Dear PMRpro, thank you so much for your advice. Yes, my body is was and is shaking... and this week after other travel and work I have realised I have / am expecting too much of a poorly person! I live alone and am self-employed and its trying to break a life time of work habits - some of which I have managed - no face book, no tv waste of time (gentle yoga and relaxation instead) but some of the work I haven't been able to cancel means if the pred is not taking care of the illness then I fear I am doing damage when I am working... When my body 'breaks' I am then not surprised but feel guilty. its a difficult circle. If I don't work I don't earn and I don't have the where with all to not work.

Is it too late to go back up to a higher dose now if I reduced too quickly at the beginning?

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

No - look for some of mamici's early posts. Her rheumy reduced her dose too fast and she ended up having to go way up to control things. It is a risk that we patients seem far more aware of than the doctors do. But then, I bet there are far more GCA patients here to share their problems than any rheumy sees in a lifetime! It is often easier overall to go slow at the start than try to catch the escapee. At what dose did you still feel fairly OK?

Yes - know all above the self-employed trap. No work - no pay. But I was a kept woman - which was as well at times! Are there NO benefits for the sick self-employed? Will the change in NI contributions make any difference? The cost of insurance for loss of earnings was mind-boggling so I never had it either.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

thanks PMRpro. I am not sure what dose I feel ok on as I haven't really felt normal again yet, I have always been in an adapting phase as the tapers were quite quick. Felt best when i was on holiday of course doing nothing and bit of yoga - was on 40 then but had done a fast come down from 60 to 40 in 4 weeks...

yes i looked at insurance but couldn't afford it. the problem with my work is that I am the director of theatre and opera productions and if I am not there, nothing happens and we cant cancel the shows... in some cases I have an assistant when I work for a bigger company which is easier and she takes the work load. But I also run my own company and have a crucial world premier in Nov which involves 100 kids, 50 community dancers, a small orchestra and singers and is a new premier piece for the city.... as well as plate spinning a couple of other things in Glasgow which is easier but still travelling. I look at my diary for the last year and dont wonder I am in this illness situation!!

If i lose these jobs now I lose my career as they knock on to other jobs over the next 3 yrs. This year I just hit where I have been working towards for the last 15 yrs and was in artistic heaven and contentment - I could see financial stability too (in the arts we do a lot for love) ... and not to have to worry about the mortgage monthly - bout time at 57! The sunny side is that I still have my sight and always feel blessed because so many have PMR and have sight loss. I am counting my blessings but dont want to do any more damage.

thank you so so much for your support; I dont know what i would have done without it. x

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

I think you need to see your GP and talk about this in very plain English. No fluffing. You need to be on enough pred to allow you to work - or you starve. They often don't get that bit - that the self-employed have to work to eat,never mind keep a roof over their head. I remember a teaching moment my Scottish joiner experienced: the junior doctor said "he needs weeks off work...". The consultant pointed out that that wasn't an option - so what alternatives were there that would allow him to continue to work. But most doctors think everyone gets weeks off work on full pay like they do.

The stress isn't helping the GCA and the GCA is what is leading to the stress. You need enough pred to manage your symptoms and by the sound of it you need to go almost back to the beginning - though possibly a little less might work if you stay on it long enough. But you need stability and you won't achieve that dropping the dose in big lumps every couple of weeks. If the argument is that the risks of pred are too high - remind them that without it you could be blind and that will be you left high and dry and bust. As it is, it is all very well trying to protect you from longterm effects of pred in 15-20 years time but in doing so they are contributing to you being unable to work and live now. Starting that particular downward spiral has potential consequences that are far worse. Remind them of that.

You are presumably in Scotland? Which probably complicates it - you don't have the choice of consultant the English still theoretically do.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

wow, thank you again PMRpro. Plain speaking from one that knows; this is my script for Monday! I live in Manchester which is a good area for treatment and i have had good fast apts etc at MRI so no complaints there at all. Travel to Glasgow, Cardiff, London for work in bursts.

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

Ah - right. Choice is an option. Now you need a competent rheumy...

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

Thanks PMRpro. He has been extremely diligent with all my apts, pushing eye hospital apts and scans etc... dont want to upset the applecart in the rheumy dept but maybe need second opinion... next apt with him 14th Nov but going to ask on Mon to see him earlier.

MamaBeagle profile image
MamaBeagle in reply to Fieldofdreams

You are in England? If so then you should be entitled to ESA - Employment Support Allowance. My son was self employed and had a massive breakdown/psychosis. The doc signed him off sick and then he was helped to apply for this benefit. He also then got PIP - Personal Independence Payment. It took a while for all this to come through and he did have help from the Citizen's Advice Bureau. I have read a few threads on here about people applying for benefits. It isn't easy doing it yourself as you really have to understand what the questions are getting at - and become a "can't person" which isn't easy to do when you have been fit, active, independent and motivated!

MhairiP profile image
MhairiP

Sorry you are feeling so bad and in so much pain. I don't have any advice to add to the excellent advice above - I 'only' have PMR so can't comment on GCA.

Your cat is gorgeous - what a sweetie! It must be a comfort to have two of them to cuddle up to when things are tough.

Fieldofdreams profile image
Fieldofdreams in reply to MhairiP

thank you MhairiP. yes, without my 'fur babies' i dont know what I would do. I live alone and sometimes they just 'know' when you are in pain and they just sit next to you and love you without question. :) x

fmkkm profile image
fmkkm

Hi there,

I never had the return of the vice like head pain or jaw pain. If I am flaring my scalp gets sore, my neck hurts and I feel fluish.

Sounds like your GCA is still pretty active.

Take care

Fieldofdreams profile image
Fieldofdreams in reply to fmkkm

Dear Forwardmotion, thats really good to know your experience, thank you. yes, i sensed my GCA is still active ... not sure what to call a 'flare'. Is that what you describe above in your case - I know we are all different.

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

A flare is the return of symptoms you associate with PMR/GCA which occur because your pred dose is not high enough to manage the inflammation.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

thanks PMRpro... guess I have had a couple then but not for long periods of time - say 24/36 hrs....

Rimmy profile image
Rimmy in reply to PMRpro

I also wonder PMRpro if what we all refer to as a 'flare' is also about a surging of the disease so even if we temporarily find the 'right' dose to manage inflammation - sometimes the disease level unexpectedly anyway demands a higher amount ? Apart from tapering in a cautious and responsive way - I have thought this is what makes 'finding' and sustaining an effective level so complicated - at least this is my own experience.

PMRpro profile image
PMRproAmbassador in reply to Rimmy

Oh yes - my definition is "not enough pred to manage the inflammation" but that can happen because you actively reduced the pred too far or because the activity of the underlying disease process increasds even though you kept the dose steady.

I can be fine at a dose for months and then suddenly something happens to the a/i bit and symptoms return. Persuading the rheumy that is much harder than the GP who is also rheumy-trained - she gets it no bother!

HeronNS profile image
HeronNS

What they've all said, especially Dorset Lady and PMRpro. The key to taper really is slow and steady. Once past the initial very high doses for GCA where after the inflammation is properly controlled it seems possible to reduce in bigger chunks - although not as frequently as your doctor said - remember, no more than 10% of your dose at a time. So a taper from 40 shouldn't be more than 4 or 5, and from 30 only 3! Hope you get back on an even keel soon. All the best.

P.S. One of my cats is white, her eyes are golden.

SuziCutie profile image
SuziCutie

Hi. I would echo all that's been said.

I was started on 60mg due to GCA/PMR. Head pain eased in days but jaw pain lasted a couple of months though not so intense. Vision poor and still is .

I am down to 20mg now and plan a really slow taper now.

Love your gorgeous cat X

Joaclp profile image
Joaclp

Just wanted to add my words of support in the form of shared experience. I worked in the not for profit museum world as a curator and director of curatorial affairs in a major museum when I got very ill with RA and other autoimmune conditions at age 56. I was not self-employed but needed my job for both financial and personal psychological reasons and was very vulnerable in a cut-throat environment. My rheumatolologist keep me going on a cocktail of medications for 7 years, 3 years short of my 10 year goal. I am glad to be retired now, but not sorry I did things the way I did. I hope you will have medical support. Best wishes.

Fieldofdreams profile image
Fieldofdreams in reply to Joaclp

Thank you so much for sharing your experience Joaclp. Its a juggling act and as a women in mid 50s its extra difficult isnt it. Will discuss it with my rheumy. Are you pain and med free now?

Joaclp profile image
Joaclp

Oops. Kept me going.

PMRpro profile image
PMRproAmbassador in reply to Joaclp

You can edit - though how easy that is on a phone I don't know.

Joaclp profile image
Joaclp in reply to PMRpro

Thanks. Not sure. Sometimes I move to my computer.😊😁

PMRpro profile image
PMRproAmbassador in reply to Joaclp

I only ever use a computer - would take me forever on a phone even if I had one!

Joaclp profile image
Joaclp in reply to PMRpro

Never thought i would have a smart phone. My luddite husband bought them a year ago when we moved, and now he has become a nerd!

PMRpro profile image
PMRproAmbassador in reply to Joaclp

No point for us - takes me to come anywhere near using the 5 euros credit per year on my Italian one! And OH is far worse, can't even use it which makes spending the credit a bit difficult.

Joaclp profile image
Joaclp in reply to PMRpro

Reply about OH to you.

PMRCanada profile image
PMRCanada in reply to PMRpro

Any of my posts that have spelling/grammar errors were typed up on my smart phone (I'm much better and faster on the keyboard opposed to writing messages via my phone). My husband doesn't even own a cell phone, but he appreciates mine when we are re-routed in traffic, if we need to contact his kids, or when picking up his son from a concert in Toronto with 35,000 concert goers in the vicinity.

Joaclp profile image
Joaclp

While you are feeling friendly I'll ask a naive question--what does OH stand for? Only husband, old husband, something else? Btw my laptop weighs a ton to my painful untreated arms. Only lift it once a day. JoA

PMRpro profile image
PMRproAmbassador in reply to Joaclp

Other Half...

PS aren't I always friendly :-)

Joaclp profile image
Joaclp in reply to PMRpro

Of course you are friendly. I just hesitated to ask a silly question when your expertise is so much in demand and you are so generous with your advice.

PMRpro profile image
PMRproAmbassador in reply to Joaclp

No such thing as a silly question - and I can muck about on the forum too! I even poke my nose in to answer other people's questions when I know the answer and get there first :-)

dartmoorlass profile image
dartmoorlass in reply to PMRpro

.........and thank goodness you do PMRpro!

Telian profile image
Telian in reply to PMRpro

We learn to take the good with the bad, can't comment on the third!

PMRCanada profile image
PMRCanada in reply to Joaclp

I asked the same thing.

sennetta profile image
sennetta

Hi Field of Dreams,

Sorry to hear you are having a tough time. I have PMR so can't really comment from personal experience of GCA and others more knowledgable ref this condition have proffered more useful info than I can. That said, the patient notes I have here which were provided with the Prednisolone do say that consumption of grapefruit is contra indicated when taking Pred so you might like to bear that in mind as well as a possible allergy to citrus fruit.

I am interested in your comments about working in performing arts - my husband was a tech and artistic stage manager for 30 years and I was involved until we started baby farming and one of us had to stay at home. Many do not understand the self employed need to work and even more think that those working in the theatre work only evenings. "What do you do during the day?" was a question we were frequently asked! (Roll eyes!!)

Now we are teachers and the question is now "What do you do with your evenings?" (More rolled eyes!!!!) interested also to see you have connections with Glasgow - that's where we trained, met and married.

Good luck - you will get through this as others have shown.

Fieldofdreams profile image
Fieldofdreams in reply to sennetta

Wow, I didnt realise grapefruit was contra indicated. i had the most awful reaction and in front of a cast and chorus of 25! I am a theatre and opera director and yes the hours are often 24/7. why is is only the director and SM tech do 3 session days; then theres the touring, and finding food at 11.30 pm! Working at Scottish Opera and RSC on and off and WNO and Opera North as well as having my own theatre company, based in North West and trying to complete a phd??? GCA ... caused by stress and over work??? I think there is a link. lol lol.

BUT I adore my work and this year reached a pinnacle in m y career with a couple of shows - mid 50s finally feel content and then boom! Aug 13 - the day after I finished a big show with my own company and had of course completed the strike!?! I finally went to the doctors and was on 60 mg of Pred within 20 mins! I knew i was poorly .... - and for me it its the last time I say - the show must go on!

But I admire you. I couldnt teach full time. I do some work in schools but I just go in for a workshop, do my bit of magic and then leave. Full time.... wow, now thats tough!

sennetta profile image
sennetta in reply to Fieldofdreams

Opera North? - you'll know Jane then - company manager - we have an association with her going back nearly 40 years. If you see her mention Chris, my other half. Husband worked for Scot Op - years ago - small scale touring in Highlands and Islands and also for Scottish Ballet. After children (4 of them - we found out what was causing it eventually!!!) we settled for working in a small scale receiving venue and I did b and b for the visiting companies to boost our meagre income and feeding / watering folk into the wee small hours plus filling them with meds if they were unwell and almost pushing them on stage. The audience don't know the half of it - it's hard work but one loves the life all the same. The show must go on, right enough. I was more the supporting act for most of the time, but I now teach one to one - instrumental and singing. Husband does the tough stuff - full time at the front of a classroom plus he has a professional singing post elsewhere which takes up another 26 hours a week. I am less pressured than him, work wise but I am the one with PMR! I think holistic and functional medicine play a big part in allowing me to keep going and I manage to do a great deal because of it. I don't really notice the difference if I am organised about taking it all BUT - I DO notice if things go pear shaped and the supplements get forgotten and/or I deviate from my fairly strict diet. Good luck to you

Fieldofdreams profile image
Fieldofdreams in reply to sennetta

Oh Jane and I have been friends for 30 yrs! Amazing! What a life we lead dont we. I still get my farming family relatives asking when I am going to get a proper job!!! B and b very hard too. My mum and dad had a 10 bedroom place and it was very hard. Sounds like our paths may have crossed and i do wonder if an over zeleous work ethic may contribute to GCA! :)

I dont know how i would cope if i had PMR as well, you poor thing. I hope your kids help you now!

Lots od love and luck to you too. X

sennetta profile image
sennetta in reply to Fieldofdreams

I've pm'd you!

Telian profile image
Telian

I agree with all that others have said and won't repeat all of it. However I feel it important to reiterate that you haven't found the optimum dose for you illness yet, as you would definitely be feeling better than you are if you had. When I went on 50mg Pred ALL of my symptoms were gone within 12 hours.

I have GCA/PMR and my taper was not as quick as yours by any means. I stayed on the first dose for 4 weeks and only when the symptoms were stable was a reduction attempted. I had lost the sight in one eye and fortunately it came back! You might get some symptoms the first day of reducing, which is normal, but they should go within a couple of days or so. These are called withdrawal symptoms and mean your body is reacting to the change in dose. While blood results are important symptoms are key and you must listen to your body. Raise blood markers mean infection but you can have those from a cold. I was taught from day one to learn the difference between a flare and withdrawal symptoms. A flare comes on at any time and does not go away. I take Paracetomol to help reduce the symptoms of a withdrawal but no pain killers help fully, they only deaden the pain - the exception being with a flare it will not even deaden those symptoms. When that happens you should go back to the dose you were last pain free on and stay there until the symptoms have settled before attempting the next taper. The fact you have had no respite indicates you haven't been on a high enough dose in the first place and then the quick reduction has just exacerbated the problem.

I agree with DL and you should consider increasing your pred NOW to a dose that eases your symptoms - try 10mg at first then by 5mgs until you feel better. Your eyesight is at risk with GCA and you need the correct dose to treat the inflammation. This can easily be reduced once you've found your appropriate dose with the guidance of your doctors. Just be mindful of your eyes - if you get any visual disturbance ask for an emergency appointment at your GPs or go to A&E.

Important to stress that future reductions cannot be as quick as before - both the dose and timing need to be carefully tailored for you. Your Rheumie/GP will listen, he/she doesn't know it hasn't worked for you until you tell them and also knows that what works for one doesn't another.

Once you are on the right dose you will start to feel much much better and be able to go to work once you are stabilised - just remember to pace yourself to get through your days from now on - acceptance is key and you will improve much better if you do - if you don't you will just get worse, this illness is in charge but you can adjust your lifestyle without giving up what you like to do once you get to know your body.

Fieldofdreams profile image
Fieldofdreams in reply to Telian

Thank you so much. Your advice and wisdom and experience Echoes pmr Pro and Dorset lady and others on here and it is advice that I am going to follow and get an emergency appointment with my doctor tomorrow. I have begun to feel a little bit better today and attempted some work at the computer however temple pain came back so I stopped I think I need a good honest chat with my GP a revisit to my rheumy and reassess dosage and everything everyone has said. Thank you once again and I hope you have a good day

Telian profile image
Telian in reply to Fieldofdreams

I''m pleased you feel heartened by all the advice - enough to give you the confidence to have that 'good honest chat'. Let us know how you get on and enjoy the rest of your weekend.

prunus profile image
prunus

My heart goes out to you but Dorset Lady has expressed my feelings. It is too quick a taper. It needs to be much slower. I do not know how you can manage to go to work. Fortunately I had retired. In spite of that I struggled and at times went up the stairs on all fours. I also bathed because I did not have the energy to stand in the shower.

As regards grapefruit - I found I never felt right when I ate grapefruit. There are 43 listed drugs which grapefruit does not agree with. I did wonder with the way I felt if predisolone should be added to them.

Like you have already been told you must rest as much as you can.

Fieldofdreams profile image
Fieldofdreams in reply to prunus

gosh, who would have known. the first time I ate it on Pred I was okay. The second time was horrendous and in front of 25 people in a rehearsal and me directing slowly covering in a rash! :) well it added a bit of drama to the day! Needless to say I was a bit panicked and glad I had antihistamine with me. 4 tablets later - and 2 hours later the rash had all but gone! oh the Pred journey.

kay7954 profile image
kay7954

I was diagnosed with GCA/PMR in May 2018. I only now have days without headaches. Once I started the prednisone my headaches were improved by about 60%, now I get them but much more less frequently. Body pains still happening and I see they get aggravated when I am stressing. I'm currently on 20mg now, down from 60mg.

Fieldofdreams profile image
Fieldofdreams in reply to kay7954

H iKay, thank you so much. how quickly did you go down from 60 mg to your next dose?

daworm profile image
daworm

Easy answer...no...

Hilaryjm profile image
Hilaryjm

Have you done anything about diet? You have an inflammatory auto-immune condition, so you may want to investigate an anti-inflammatory diet. If you can find a nutritionist locally who takes a Functional Medicine approach, s/he will be able to help, but do look up Autoimmune Protocol and Paleo diets. I had a string of inflammatory conditions including GCA/PMR and ended up with Atrial Fibrillation. My diet has changed completely, and symptoms nearly all gone. Basically move away from gluten, dairy and anything containing them. There are other things you can do like Omega 3 supplements and lots of other advice online.

Fieldofdreams profile image
Fieldofdreams in reply to Hilaryjm

Hi Hilaryjm,, thank you so much for your suggestions which are really helpful. I have modified my diet quite early on. I am a vegan anyway but have cut out carbs and added more protein. I had an allergic reaction to grapefruit the other day so sadly thats gone now. I am taking a range of supplements suggested by my local nutritionalist who has helped me brilliantly in the past. So far I have kept my weight stable - actually lost 2 lbs which I am not unhappy about but i am slim (and intend to stay that way). I can cope with the disease but not getting fat. I have this seasons 'moon face' but its ironed out the crows feet so there are benefits on the bright side. I am going to look autoimmue protocol too. I am so sorry that you ended up with Artrial Fibrillation! Thats no easy ride at at! I plan all my food very carefully now - I travel quite and bit but now take my food - being vegan is not tricky as long as you plan well and get the right balance.

I hope that you are well now and continue to be so. Warmest wishes

Fieldofdreams profile image
Fieldofdreams in reply to Hilaryjm

Sadly after doing some research on line the diet is not going to work for me. I wasn't familiar with it at all. I am a committed vegan and to eat meat, fish and not nuts, legumes and seeds wont be possible. Still, the diet I have now is probably better than the last 15 years as I am eating regularly, good organic food and feeling good on it when the pain is not there. thank you again for alerting me to it. x

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