I had been suffering from a really sore head, for Truly around 4months now, thinking it was just stress or lack of sleep, I left it for as long as I could bare to. By the time I felt I had to see a doctor, I could barely move my arms, all around the back of my neck was sore, into my shoulders & down my arms, even my hands & fingers started to feel funny, not so much pain, as pins and needles.
The sore head by this time was a severe sharp pain on the right side of my face. Well temple actually. It would strike umpteen times a day, and I would have to grab my head on that side. My hair was even hurting me when I would wash or brush it.
I had a Basal cell carcinoma removed right in the area of the pain on my face, last year, it was completely removed & has never bothered me since, until now, as I was not sure now if it was inside that wee scar, that was hurting so much.
So I made the appointment, explained all my symptoms which had grown by the time I got the appointment. To get a same day appointment you have to go through the triage nurse, on telling her My symptoms & how long I had this headache, for a month now, She said that meant I did not qualify for a same day appointment, as it was obviously nothing serious that I had The headache for so long.
As a long time sufferer of Fibromyalgia, I seldom go to the doctor right away when a weird symptom hits me, I usually give everything enough time to run it's course & then let it take a holiday, until some other weird symptom strikes.
Anyway 2days later I saw the doctor, she did seem concerned and took a blood test right away, so she could get it off before the courier picked the blood work up. She said she would be calling me as soon as she got the result back, as she felt I would need to be started on steroids right away. IF she did not call, I was to call for the results.
She did not call so after the week was up I called I was given nothing to report result, blood tests very fine.
So back to NOTHING really, just get on with it.. which is what I did for the next 3months, popping paracetamol 4 times a day for a headache that never shifted, I also take TRAMADOL, Gabapentin, & Amytriptline, as Peripheral Neuropathy was diagnosed several years go as well. But none of those meds even touched this headache either. OR the aches and pains in my upper body now.
By the time I called for a same day appointment 3months later, I could barely walk, could not dress myself, could not even move my left arm away from my side. And that HEADACHE!! It was blinding me.
So I saw one of the other doctors at the practice, she listened intently, then asked me some questions, as well as examined me, well tried to examine me, I was too sore to be touched at all. She took my blood pressure & her actual words were, " bloody hell"
Ok she said we need to gte this sorted out. She said she was going to repeat the blood work, & hopefully she would get to know what we were dealing with. It was then she mentioned Polymyalgia, asking if I had heard of it, NO says I. So she explained what it was, she said you have all the symptoms, all we need now is the blood work to prove it. She seemed concerned about my headaches and asked a lot of questions as to my vision. Which I told her was more blurred now due to this sore head.
Again she said, to expect a call from her, but if not, to go back in one weeks time anyway, so I made that appointment on my way out. A week later I turned up for my appointment, the blood work showed one of my kidney functions were low, I had an under active thyroid, & was a BIT low in vitaminD. However, the condition she had mentioned was not there in the blood work.
She sat looking a me, & then said OK, I am going to get you started on some steroids NOW, I KNOW you have this condition, so let's treat it. She prescribed me Prednisone 15mg 1 5mg to be taken 3 times a day, and to go back next week, that is this FRIDAY coming..
I had the 3 pills on that Friday, & on Saturday morning for the first time in 4months, I woke without a sore head, it did come back as the day wore on, but it was not there first thing when my eyes opened. By Sunday, it was gone, I felt less sore all around my neck & my shoulders & had NO pain at all now in my arms, which I could not even touch before.
Monday was a great day, I could actually do my housework again. The fatigue I had also was Infact gone. INFACT I had a renewed energy, I have put down to the steroids.
Tuesday was pretty good as well. Although I did feel a bit more tired, but then I had worked a lot the day before. This morning, I woke after just 3hours sleep, and later in the morning I was struck in the Side of my head again with that sharp pain. It has come & gone throughout the day. And right now, it is 8pm, & I am starting to hurt in my neck & shoulders again. I guess after all that, my question is, is this what happens? does it come & go? Or can it be gone for good? Also how long do I stay on steroids for?
Thank you for reading
Kate
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Hi Kate, you seem to have had a rough time. I am glad the steroids worked their magic at the beginning. One thing, you have an illness and all the steroids do is reduce the inflammation, you are still ill, and PMR is very intolerant of activity, you need to take things easy and rest. The trouble is a lot of doctors give the impression that you take steroids and you are then back to normal, this is not true, PMR is life changing and you need to adjust your day to day activities to keep the PMR happy or it will come back and bite you.
The steroids do not really help the tiredness which is a symptom of PMR. Steroids can also make you feel overactive and some people will find them themselves cleaning the house in the middle of the night.
Usually people start on 15-20mg and take them in one go early morning. I suppose if taking it as you do works that is fine. A lot is based on personal needs, so we just adjust things to suit ourselves.
PMR normally lasts for at least two years before going into remission, it can be a lot longer and sometimes a little shorter. You will have to slowly reduce the steroids over time to find what level is needed to keep the inflammation under control. This gets less over time. PMR will remain in the body for the rest of your life and can raise its ugly head again even years later. This is not always the case luckily.
One thing, if you are taking steroids you should take vitamin D and calcium because of steroids side effects, your doctor should have mentioned this. You should also have a Dexascan to check your bone density as steroids can cause osteoporosis.
There is a sister condition called GCA, Giant Cell Arteritis. This causes a really bad headache down the side of the head, jaw pain when eating, tender scalp so it is painful to comb your hair and blurred vision. This can cause blindness so you need to act quickly if you have problems as you cannot recover your sight. If you have a sharp pain I would tell your doctor IMMEDIATELY. If you start having vision problems you should be going to the hospital's emergency department IMMEDIATELY.
Thank you so much for reply, I have been reading lots of posts on here, & have to say I find the information really clear & positive. And I can not thank you all enough for that. I am finding that the steroids are weakening me up in the wee small hours, hence why I am sat here @4.am, woke up @ 3.15am. This has been the pattern since starting on the steroids. So maybe I shall discuss with my doctor that I take all 3 steroid pills in the morning. As I really need my sleep.
I am just so glad I found this site. As I shall use any information I find her to run things by my doctor. Once again, thank you for responding to my first post.
Followed you ladies advice & took the steroids all together this morning, so hopefully things might improve when it comes to bedtime tonight.
I shall report back tomorrow when I have seen my doctor to let you all know what she thinks.
I just keep thinking now that because I had what I can only assume was a quick & productive reaction to the meds, that she might think (that is it) & NO way do I want this flaring up again. Especially the headache & soreness around my face & temple area.
So tomorrow can't get here soon enough for me now. To see what path we shall be going down IF any.
I'm sorry to criticise but I'm a long term sufferer /surviver the steroids should alleviate the fatigue completely if you get your levels right but can be a long journey depending on how much or how good your doctor is and everything else and yes I take mine all in one go it does help how they are spread out or not but it is a personal journey and everybody's is different but do not be afraid to say as you and you doctor need tof work closely to get it all right xx
Sorry to disagree - but pred does not always relieve even all the symptoms and more often than not does little for the fatigue. A 70% global response if felt to be acceptable - more is obviously better. The pred does not affect the underlying autoimmune cause of the symptoms we call PMR and that continues in the background. It is that that causes much of the fatigue. It is the same as lupus and RA - and in both patients still have the fatigue problem despite being well managed on medication.
Yes I did say on my other post that it is a personal journey and it takes time working with your Dr tweeking your medication to suit you! I do realize that most of us have other underlaying problems too xx
Hi Pammy, PMRPro is saying that your statement that pred should alleviate the fatigue completely if you get the levels right is incorrect. Pred helps alleviate inflammation which is causing the pain. It is not alleviating the fatigue caused by the PMR. If you have no fatigue you are very lucky.
I do suffer from fatigue very very badly when I've had flares that's why Im on a permanent maintenance dose the last time I did I could hardly walk but I am ok if they get my levels right its not luck at all after all I'm not a novice I've had it over 6 years .There is certain things in you life that you can and can't do to help as well .But like I say that's just my journey and the research goes on and they change their ideas all the time has and will go on doing .I'm just stating what ive found no more x
pammy_hyland, PMR didn't fatigue me. Pred, however, has done so. And I've been below 5 mg for over a year now. Still little energy. Occasional days when I feel normal, but just as likely, despite being careful not to overdo things, to crash a few hours later.
I had over a year undiagnosed, and have been on pred just over two years. I had lots of energy in the beginning. The fatigue set in at 7 mg and hasn't really gone away although I don't usually feel like I've been hit like a truck, as I did for a while!
Thanks for the reply, I shall certainly be bearing in mind all of you here with so much knowledge when Go to my appointment tomorrow. I can only thank you all for the kind words and real help..
This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.
Apologies if I'm repeating what you already know.
It's what I've gleaned from my own (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.
There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.
PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.
Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.
In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. If only affecting your head it's sometimes referred to as Temporal Arteritis (TA).Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.
The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes or high blood pressure, but not everybody gets all the side effects, and they can all be managed.
Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!
The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.
The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.
When you collect your fist prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or surgery may have leaflet.
The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!
As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.
Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!
Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated
about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.
Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.
You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.
Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.
Wow! Thank you so much, lots of information there, especially on overdoing things, which I am afraid has always been one of my failures, (even though I have ways thought it one of my achievements) as I like to keep busy. And am just thrilled when I can do that needs doing in one day.
But, I shall take on board everything You say, & of course all the help in replies I have received. I shall also check out the main PMRGCAuk site as well plus the book by Kate Gilbert.
The doctor did show me the steroid card that I would need to carry, but said she would leave that for my next appoint,ent (Tomorrow, Friday) not sure why, maybe she wants to see if the steroids have helped. Now I am a wee bit concerned that because they have helped so much. She might think that I can stop them now. Which in all honesty is what I thought would happen. A dose of steroids for a week or so, & all back to normal.
I can see now that might not be the case. At least I will know now at the first sign of these symptoms again, to NOT just ignore & think, just another Fibromyalgia Flare. It will leave in it's own time.
As I said above, thank you for taking the time to respond, & with so much information to look inot as well.
I hope right now you are sleeping like a baby, & doing well yourself DorsetLady.
Having re-read your original post and reply, I agree with S/Jane your symptoms sound classic GCA to me - I remember them well even after 6years.
IF it is GCA then you need more than 15mg, and the dose should be taken in one, preferably early morning, not spread out during day. GCA needs the full dose in one hit to combat the inflammation caused. Your initial reaction to Pred would indicate it is PMR/GCA, and the fact that response tailed off indicates dosage not enough to treat GCA. Blood tests don't necessarily have to be high, many never have raised markers, the symptoms are the key.
Unfortunately sleepless nights are par for the course, especially at the beginning when your body is getting acclimatised to the drug, but most find it does return to normal as you reduce Pred. Luckily I now sleep like a baby, but it was hard early days! (Or should that be nights!)
Hopefully you will have a bit more knowledge when you see doctor again, and can discuss the way forward. If it's GCA then it's recommended that a Rheumatologist be involved in your care.
Please let us know how you get on with next appointment, take care.
My gut instinct is that you need a higher dose of Prednisalone. Also that it could be GCA. Your positive initial reaction to the steroids was probably your body telling you that this is what it needed, but there wasn't enough of it.
The trouble is our symptom picture gets so complex as we get older with multiple disorders fighting for prominence. I really hope that you get a more definitive diagnosis when you see your doctor. It really is too bad that you have had this head pain etc. for so long. I can understand being reluctant to report every weird symptom with Fibromyalgia, I went on for years like that. GPs don't seem to make connections and treat everything in isolation. Don't lose sight of your energy robbing under active thyroid in all this. I have it to and it needs to be treated. Also lack of Vit D can cause PMR type symptoms, you need a lot of it.
Please let us know how you get on, your doctor sounds sensible. I wasn't clear whether you were on 15 mgs in total or 15 mgs 3 x a day the former is a starting dose for PMR the latter a cautious dose for GCA.
Blood tests do not always show these diseases according to sufferers on here. You sound Classic to me.
Good luck, speak soon and welcome to this really supportive group.
As with the others who have replied with their knowledge of help about this condition, I can only thank you. As it means I now have somewhere to find out more information, should it need to discuss with my doctor. It is not always easy when one has so many other autoimmune conditions attacking ones body. To know if this is just part parcel of say Fibromyalgia & it may well be. But I might get a better idea of what is what when I see my doctor again on Friday. I am ust so glad she took the decision to start me on the preds.
And for them to work as they have done. And now I know that this condition requires a longer period of taking the Pred, if one is to get rid of it altogether. Or at least put it into remission for several years. My dosage is for 1 5mg tablet 3 times a day. So a dosage of 15mg in all. But I think I shall discuss with my doctor about taking thenfull dosage in the morning. As I think the later one I have been taking an hour before lying down at night. Is responsible for keeping me awake or for actually wakening me up in the wee small hours.
But anyway jus want to say thank you to you & the other ladies who replied to my post. I shall post again after my doctors visit to let you all know how things went & what if anything has been changed.
Hoping this post finds you well yourself SheffieldJane.
The pain of fibromyalgia does not respond to pred - it isn't an inflammatory condition and all the pred does is relieve the inflammation. About 1 in 5 patients do not have the raised blood markers - but for those who do. that is the easiest way to tell the difference between PMR and fibro.
Thanks for that bit of info, another one I need to write down (just incase) also the fact that NOT all patients have been diagnosed due to a blood test. I do not feel so bad now knowing that.
There are several of us on the forum who never had ESR out of single figures, even when we were next to immobile. The symptoms are ALWAYS the king - the lab stuff plays a supporting role. Which is probably why so many doctors struggle with diagnosing it: they love their numbers and lack clinical skills these days.
Yep I was ages before diagnosed another doctor who new about PMR told my doctor what it was and I've been on my journey on prednisone for 5 -6 years now down to a maintenance dose of 5mg which I'm staying on now .By the way the tingling hands is carpal tunnel which goes hand in hand (Haha pun) with the PMR and I've had the op on both my hands which was very successful .Good luck and make sure you take control of your own journey don't be bullied as you are the only one that knows what/how you feel ! You might need your dose to be upd at the moment to alleviate the fatigue before finding you best levels over the years ,Most of all be kind to yourself and listen to your body xx
Geez you must have suffered then, if it took so long for your diagnoses, 5-6 years? And still on the pred, is thta because you were NOT caught quick enough? This place is great for information and advice of every sort. Thanks for your input.
The pred relieves the symptoms - you have to manage the rest! Your muscles remain intolerant of acute exercise - so you have to learn your limits and stick to them. Overdoing things - and that means doing far less than you are used to - will bring back sore muscles which will take longer than usual to go.
This is a whole new normal - it takes a bit of time but you will get used to it.
Well I have just spent hours reading & digesting all the links you sent, & I am blown away with that spoon theory. It has been me for so many years now, I barely go anywhere, for fear of letting someone down again, usually my hubby or kids who are forever arranging something for "us" to do at the weekend. The thing is, I never know from one day to the next how I am going to be. We have gone away for long weekends or on holiday together, & after being with them all day, I am just ready to collapse, but know I best try at least. So off we go to dinner then maybe a bar with entertainment of some kind. I prefer when the grandkids were with us, as it used them a lot as my excuse for taking them home so "they" could have longer out.
I usually get away with it then, as the drink had been flowing & the were up for a good night. So yes, me taking the grandkids back to the caravan or holiday complex was never so much questioned then.
But when I agreed after great persuasion to GO somewhere or DO something NEXT week, then I could barely move, & had to call to cancel, the SIGH down the telephone was LOUD & CLEAR, here we go again, then the why do you agree to go or do if you KNOW you won't do it. You are always going to cancel. And NO, I no longer try arguing with them, as they really just do not get it. So I have saved the Spoon Theory for the NEXT time I let Them down. And I shall ensure they READ it as well.
Now my grandkids are mostly up, youngest 12yrs old, my own kids are in their late 40's son 50yrs old next year, with lots of complaints I recognise, and when they ask me about something that is hurting them, or stopping them from doing something. Usually I just say something like, "welcome to MY world" Then offer any advice I might have.
So yes, it will be good to se edit explained in more & better detail than I have ever been able to do..
The thought of what you are being expected to do makes me feel tired just reading it! Unless you were a child mother - you have to be 70 with a 50-year-old. No - don't think they'll like it much when they discover what growing older is really like! It ain't like those adverts - take this pill and you'll be a 20-year-old again...
Hi Kate, I really sympathise. When diagnosed with PMR I carried on saying YES to everything, but very soon learnt that having pred is life changing and I had to fit my life around the idiosyncrasies of PMR. I have now learnt to say NO. I do find it difficult to turn down things which I know will be fun, when I know I will have trouble afterwards and feel really miserable during them. I am getting better at saying no and do not mind quite so much having to miss out on things. You have the PMR your family and friends do not, it is very difficult for them to relate to our problems and pain, if not virtually impossible.
Yes it has come to the time when NO has to be the easiest word for me now. Slowing down due t aging is one thing, but slowing down with so much pain at this age is another story altogether eh!
Hi Kate, I try and pamper myself and do things I never thought of doing in the past. I have pedicures and leg massages. I go swimming and afterwards a friend of mine and I have a glass of champagne every time I win on the premium bonds. Otherwise we have coffee and biscuits. I read a lot more and like using smellies in the bath. There are all sorts of things you can do that you never had time to do before because you were rushing round. It does mean you start to think about yourself more which I never did.
There sure are lots that I can do for "just little ole me" when I was first diagnosed many years ago with the Fibromyalgia, I also did a Pain Clinic Management course. So I got very good at pacing myself when it came to slowing down, when my time was my own & I was on my own all day. Husband & I lived & worked ON a farm, out in the country, in a different county from our kids back then.
So it was weekends that took me out of my routine, as my kids and grandkids would come more or less every weekend, which we LOVED by the way.
When I had to give up work, I would take things easier during the week, do things slower & over my day instead of doing it all every morning..This helped to make up for the busy weekends.
I did have to go take an hour or two during the day. When they were staying over all weekend. They knew this. But I don't think they ever really understood it. Heck I looked the same, so how could I be ill.
Now we are retired life is much easier. Or at least it was until this PMR. I really lost 6 months of my life, wondering just what was going on, how could someone have a sore head for 6months and it not be a brain tumour.
Then came the pain, the weakness, the fatigue, & no matter what I did, no amount of pacing shifted any of it. Until a week past today when my doctor decided to take things into her own hands and treat me with steroids.
It was 4am when I woke this morning after enjoying 5hours sleep last night. So I am going to stick to taking the steroids in one go each morning.
And this week I shall set myself a different path of pacing & resting, so that I can get a grip of this condition better.
My headache cleared up again yesterday as the hours passed since taking all the steroids, however I did get pain again around the back of my neck As night time came in.
So it is changing on me. But it IS only a week. Maybe I shall get that really great feeling of those first 2days when the steroids were first taken last weekend. As even I would never have known there had been such pain 2days before. That is my GOAL now, to take control.
I DO have a question though? Right now my mouth is so dry my lips are sticking together, it has taken me over an nine to write this as my eyes have been so dry and so gritty I could barley focus. Is this a side effect of the steroids?
Hi Kate, you seem to have a very good enjoyable life apart from the PMR. I had gritty eyes with the steroids and my doctor gave me something for it. The only trouble is it was the wrong thing and I was allergic to it. Luckily the pharmacist sorted it out. My doctor said she was not very good on drugs. Frightening. At a lower dose the gritty eyes are much improved. I also get a dry mouth with sticky lips which I put down to several of the drugs I take!
I had the gritty eyes as a result of the PMR, definitely not the steroids as I wasn't on them. But steroids can also contribute to eye problems and also cause a dry mouth. It may improve as your body gets more used to the steroids and also as the dose lowers.
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