Signs of GCA?: Hi I was diagnosed with PMR nearly... - PMRGCAuk

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Signs of GCA?

ValleysBoy profile image
64 Replies

Hi

I was diagnosed with PMR nearly 2 years ago and had reduced down to 8mg pred before Christmas before shoulder and hip pain made me put it up to 15mg again. I have now reduced to 12 mg, (split 6mg late at night and 6mg late morning). The pain has not gone away totally but is generally livable with as long as I do not sit still for any length of time. (The rhumy took me off the split dose, which I had arrived at myself by trial and error, in November, insisting it was better to take it all in one dose in the morning. It was that that caused the flare I think).

Anyway within a few weeks of starting on pred I developed various symptoms which have stayed with me over the past 2 years. Can people tell me whether these are within the normal range of symptoms. First I seem to have developed an almost non stop dribble or fluid escaping from my mouth. Especially when I am asleep. Secondly I seem to have a lot of cattarh which is for the most part clear in colour but I bring up a lot of it. Thirdly I need to go to the loo, booth ways, every two hours or so day and night. This is not good.

My gp sent me for a chest x-ray which came back negative and has tried me on various medications for my bladder and bowel difficulties. None of which has made any difference. So after a few months trial on each I have stopped them. So I just live with consequences. I just wonder if these are pred symptoms others have come across and if anyone has any advice on how to tackle the issues.

More worrying is yhat recently I have had problems with my left eye being out of focus. It's like I've got something on my glasses lens but I haven't. It's not cataracts as I have had both eyes done. I had an opticians appt who had referred me to the eye hospital. They have suggested I may have glaucoma in the right eye. (The one I am not having any difficulties with), but they have said the eye pressures are low so I don't understand that. They have referred me on to see an eye consultant in April.

I have also started to get aches in my teeth and a dull kind of headache which seems to hang around a lot of the time and seems maybe linked to my eye problem. I have been very lucky in that I have never suffered from headaches in my life so this is noticeable even though it is more of a dull ache than a real pain.

I have been wondering whether these latest things could be signs of me developing GCA. Do these symptoms make any sense to anyone?

Any help or advice would be gratefully received

Thanks

Steve

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Steve,

I would have thought (hoped) that the eye hospital would have picked up any trace of GCA. Did they give you any indication why you have been referred to specialist - or is that just for glaucoma ?

Have the headaches and teeth problems come on since your visit to eye hospital? Does the jaw hurt when eating, and then cease when you stop chewing?

It could be GCA, but also TMD - have a look at this -

nhs.uk/conditions/temporoma...

ValleysBoy profile image
ValleysBoy in reply toDorsetLady

Thank you for your reply. To answer your questions. Yes it was because of the suspected glaucoma in my right eye. I asked if this could be caused by the pred or the pmr and the optometrist said no. Also that the eye pressures were normal. So he was referring me to see a specialist. No they have not come on since my visit to the hospital. They came on in a very mild form towards the end of last year so I went to specsavers for a test. It was they who referred me to the hospital but it took a long time to get the appt. In that time things have gradually worsened and now have become a real daily problem. The teeth issue has also come about and worsened since the beginning of the year. I have been taking the Alendronic Acid every week and wondered if the teeth issue could be a side effect of that, given comments on here but I am not sure. My jaw does not really hurt when I am eating or chewing. Like the headache it really a dull ache around my teeth.

I thought that if it was a problem with GCA that like you said the hospital would have picked it up. But I suddenly wondered if it is something they can actually see and detect. What gets me is that I find it difficult to believe that I am getting this blurry vision in my left eye only and yet they say there is absolutely nothing wrong with it. Whilst the other one, which is fine as far as I can see, they think has glaucoma.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toValleysBoy

Hi again,

Optometrist is not strictly correct, Pred can increase pressures in eye which can then lead to glaucoma - although he says your pressures aren’t raised. Is there a family trait of glaucoma...it is mentioned in the patient info leaflet with regard to an issue with Pred.

Blurriness is also a side effect of Pred, but one would normally expect both eyes to be affected not just the one..that definitely need further investigation I think.

AA could be affecting the jaw....have you been to dentist recently - if not, think it might be an good idea...if you can get an appointment that is. Did anything in the info regarding TMD ring a bell?

Please keep us informed of how things go with all things.

ValleysBoy profile image
ValleysBoy in reply toDorsetLady

Hi Dorset LadySorry I got the term wrong. It was some kind of optical practioner at the hospital but not a consultant and not an optician.

No history of Glaucoma in the family that I am aware of but lots of rheumatic problems. My mum had RA from the age of 12 and 2 of my nieces have it now. If this is related then I am very fortunate not to have suffered problems until late in life.

I usually go to the dental hospital for my check ups but it is closed at present due to covid so that will need to wait for a bit. Although as I have said the jaw pain does not really feel as though I have a particular problem with any of my teeth. Just a dull general ache.

The TMD symptoms are interesting but don't really fit for me.

As PMR Pro has also questioned the role of AA. I have decided to stop taking it for a couple of months and to see of things improve. Thank you again for taking the time to reply I really appreciate you thoughts and advice.

Cheers

Steve

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toValleysBoy

Don’t worry about terms! But what tests were done? Usual sight test I assume, field of vision, pressure test...and hopefully slit lamp test (using lights - after drops inserted).

Anything else ?

Good idea to stop AA, although it’s prescribed almost automatically it’s not always required....unless you know you are have osteoporosis or osteopenia.

Have you had a DEXA scan to check? Might be with asking. Most people find Vitamin D/Calcium supplement is sufficient to protect bones.

ValleysBoy profile image
ValleysBoy in reply toDorsetLady

HiYes all those tests were done. Some with and some without drops. He seemed to suggest the field vision test for my right eye had been problematic and he thought there was probably glaucoma in my right eye only so was referring me on to the consultant. Appt due late April.

I will stop the AA for a while to see if it helps. I was not offered a Dexa scan but the gp was pretty insistent I needed to take it.

I do take daily vitamin D tablets as well but not calcium. I will maybe see if he will change my prescription to this as you suggest.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toValleysBoy

One of the common in UK is Adcal-D3

ValleysBoy profile image
ValleysBoy in reply toDorsetLady

Many thanks. I spoke to the GP and he has suggested I stop taking the AA for a few months to see if it helps. Has also suggested getting an emergency optician appt to get my eyes checked again so I will be going this evening. He has also changed a steroid nasal spray I have been using in case that might be responsible for some of the symptoms. Was pretty sure it was not TA/GCA so I hope he right.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toValleysBoy

Okay....please let us know how eye appointment goes...and good luck.

ValleysBoy profile image
ValleysBoy in reply toDorsetLady

Hi Just an update. I saw the emergency optician last night and after 2 hours of tests drops and scans she told me the eye problem is being caused by a build up of diabetic fluid in the layers of my left eye which is what is causing the blurred section of my vision. I was a bit taken back by this as I have never been into the diabetic range, and in fact was tested about a month ago and was 5.1 which is still in the prediabetic range it has been for years. The optician has sent a letter to this effect to my GP so I must wait to see what he will want me to do about it. I have to go back to the optician in 6 weeks for further checks and scans. Definitely no signs if TA/GCA apparently which is good news.

Have at last got recieved a telephone appt to speak to a Urologist in early April about the possible bladder problems so after all this time I might get some answers as to whether it is the pred or something else causing those problems.

Like I said before I am very grateful to you and others on the list for all the help and insights.

Cheers

Steve

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toValleysBoy

SteveMainly good news then....Pred can cause issues with diabetes, but as long as levels haven’t risen too much you might not need any more medication- let’s hope not. Thanks for info - keep us updated how things progress.

in reply toValleysBoy

Hello, just thought I'd let you know that both sides back top teeth ached very badly prior to diagnosis of GCA. Plus headaches, tender head and jaw pain. So do be careful.

HeronNS profile image
HeronNS

Some years ago I did a lot of reading about allergies and chemical sensitivities and one thing I learned was that symptoms can be very varied and mysterious to doctors who are not trained to look for signs of such sensitivities. Assuming your GP and specialists have done all the routine checks and any treatments have been ineffective (except I understand partially effective for PMR, and as you note difficulties here could be due to dosing schedule etc), then I wonder whether you can see someone who specializes in treating allergies and chemical sensitivities, just on the chance that something in your environment is causing you problems?

These things can be very tricky to diagnose. A friend of mine developed an untreatable itch. Her husband who was very into computers (we are talking about the 1980s here) got her to keep track of every single thing she ate, including all the ingredients in her food. Turned out it was cinnamon - an ingredient in a herbal tisane of which she was very fond and drank every day! Eliminate cinnamon, problem solved. But it took a while and a keen technically-inclined partner to figure it out. I suggest this because digestive issues, chronic sinusitis, headaches, etc., can be caused by sensitivities of various kinds, possibly, but not necessarily, in your food.

ValleysBoy profile image
ValleysBoy in reply toHeronNS

Thank you for your reply. I have changed my diet quite a bit lately in order to try and stop the weight gain so I guess it could be something like that.

PMRpro profile image
PMRproAmbassador

I am a bit taken aback that the change in bowel habit hasn't been considered worth investigation - it is possible it is the pred but assumptions are not always a good idea.

ValleysBoy profile image
ValleysBoy in reply toPMRpro

Thank you. Although my GP has not sent me for hospital tests, because there is a huge backlog of appts at the hospital. He has been keeping an eye on my weight, which has gone up because of the pred, not down. Also sent of stool samples etc which all came back clear. So I have gradually come to terms with the symptoms assuming they are to do with the pred as they started about a fortnight after I started the pred and have continued ever since. Nearly 2 years now.

Karenjaninaz profile image
Karenjaninaz in reply toValleysBoy

Are you taking anything with magnesium? I can I tolerate ABG magnesium other than the magnesium glycinnate form. They all send my intestines into overdrive. Even supplements and vitamins can have irritating ingredients. Another problem can be lactose intolerance or sugar alcohols- such as sucralose, maltatose etc. Some products have inulin or chicory to add “fiber” to foods and supplements. None of these can my gut tolerate.

Headaches are common with acid blockers such as pantoprazole.

ValleysBoy profile image
ValleysBoy in reply toKarenjaninaz

Thanks for your reply. I will add these things to my list to check out over the next few months.

ValleysBoy profile image
ValleysBoy in reply toPMRpro

Hi PMR Pro.I have just found your posts, and those of others, from 4 years ago about bladder problems associated with PMR and the pred. That is exactly what I have been experiencing and like others the medications offered did nothing g to improve things. So that's one worry I can cross of my list. Thanks Steve

I don't know if this is any use to you but cheese and bananas are triggers for my headaches, not eaten these for yrs so pmr/pred not to blame for mine, just foods I've learnt that I cant eat

ValleysBoy profile image
ValleysBoy in reply to

Thank you. As it happens I have recently tried cutting out cheese to help stop putting weight on. I have however started to eat a banana every day which is unusual for me as I don't usually eat them or other fruits except blueberries and tomatoes. Perhaps I need to stop eating them to see if that helps.

PMRpro profile image
PMRproAmbassador in reply toValleysBoy

If you want to control weight gain on pred, the cheese is good, the banana is "bad": bananas have a lot of sugar, healthier sugar it may be but it is still carbohydrate and that is what leads to weight gain with pred.

fmkkm profile image
fmkkm

Just a thought; alendronic acid side effects can include diarrhea, mouth pain, headache, bladder infection and eye inflammation.

ValleysBoy profile image
ValleysBoy in reply tofmkkm

Thanks I realised this after reading what others have said about it on this site. One of the most frustrating things about PMR is the variety of medicines one needs to take to deal with its effects and all the possible side effects of each so you can't work out which is causing the problem.

PMRpro profile image
PMRproAmbassador in reply toValleysBoy

Which is why we make a big thing about only starting one medication at a time and not using anything that is not absolutely essential. No dexascan, no alendronic acid for a start - you won't fall apart in that few months. PPIs (omeprazole) aren't needed by all, they don't work for 1 in 3 patients and cause awful gut side effects for another 1 in 3!

You need pred for PMR - and no-one gets all the side effects, many get very few, and most of them can be managed without adding countless tablets. I take neither AA nor a PPI - my bone density is fine after 11 years on pred and no problem with my stomach. Taking pred with food, at least plain natural yoghurt is often enough.

YuliK profile image
YuliK in reply toPMRpro

PPIs has side effects , after reading these problems, I take my pred with yogurt.

health.harvard.edu/diseases...

Scroll down and read the possible side effects 🙀

ValleysBoy profile image
ValleysBoy in reply toPMRpro

Thank you again. My GP has agreed to me stopping the AA for several months to see if it stops any of the symptoms. Let's hope it is them which are causing some of the problems.I saw the emergency optician last night and after 2 hours of tests drops and scans she told me the eye problem is being caused by a build up of diabetic fluid in the layers of my left eye which is what is causing the blurred section of my vision. I was a bit taken back by this as I have never been into the diabetic range, and in fact was tested about a month ago and was 5.1 which is still in the prediabetic range it has been for years. The optician has sent a letter to this effect to my GP so I must wait to see what he will want me to do about it. I have to go back to the optician in 6 weeks for further checks and scans. Definitely no signs if TA/GCA apparently which is good news.

Have at last got recieved a telephone appt to speak to a Urologist in early April about the possible bladder problems so after all this time I might get some answers as to whether it is the pred or something else causing those problems.

Like I said before I am very grateful to you and others on the list for all the help and insights.

Cheers

Steve

Rugger profile image
Rugger in reply toValleysBoy

Have you had a DEXA scan which has shown that you need Alendronic Acid for osteoporosis? Ask your GP for a scan. I have just had my third scan, during lockdown and the local radiographer said they have been working as normal for all bar 2 months last year. I have the scans every 2 years.

I am on a similar drug, but ONLY because I have been diagnosed with osteoporosis.

ValleysBoy profile image
ValleysBoy in reply toRugger

Thank you for your reply. I will certainly request a Dexa scan when I next see my GP. He has agreed to me leaving off the AA for a few months to see if things improve in the meantime.

Snuggs profile image
Snuggs

Hi ValleysBoy regarding your bowel problems I wondered if you take omeprazole or similar? They can cause loose stools. I agree with PMRpro it's a bit surprising they have not referred you for you bowels. I went through a similar issue a few years back and was referred to the consultant straight away. The point about omeprazole was discussed by the consultant during numerous tests.

ValleysBoy profile image
ValleysBoy in reply toSnuggs

HiThanks for your reply. Yes my gp tried me on omeprazole and another similar drug but they did not improve things. As I have said he has done other tests and is monitoring me. If I had any other cancer type symptoms I am pretty sure he would get me extra examinations at the hospital. But as the problem remains static so to speak he is happy to monitor it. I think he thinks it is probably caused by the pred.

Sophiestree profile image
Sophiestree

Hi. I really hope you get some answers soon, it sounds like you have a fair few things to think about there, and limiting for you as well.Everyone here is far more experienced than me and are really giving you plenty to think about, but to give you my experience of taking prednisolone since last Oct (2020) my eyes have changed a lot. My vision is often blurry, although improving since I have been reducing my dose, I'm on 10mg at present along with TCZ, but what I do have is a floater bang in the middle of my left eye which is infuriating. I had to get new glasses for driving since starting the meds, bifocal so I could read the dashboard as well, and when I went to collect them could not understand why they weren't perfect. It was only later that I realised it was the floater. My optician, who I really like, said they can take months to move. It's still there, but I think I've just adapted to it. If you're not happy with how things are for your sight, are you near an emergency eye a&e? It might be worth one last go at seeing them, although my experience of them is to take your picnic with you as it's a long wait. Or find a really good ophthalmologist and have another test.

Re your mouth etc? Have you had a dentist check your mouth at all? Again, might not be the answer, but good to eliminate things. And lastly, re weight, as many on here advocate, have you tried a low carb diet re the weight gain? It has really helped me. But with your gut issues, maybe a probiotic as well and kefir, or other types of fermented foods. You have a lot going on and it can get all consuming.

Good luck, really feel for you.

ValleysBoy profile image
ValleysBoy in reply toSophiestree

Thank you for your reply. I wear bifocals and like you this blurriness is in the centre of my left eye but it comes and goes. It is especially pronounced when reading from my phone or a book. It is not problematic when watching TV or driving thank goodness. Can't get to see my dentist yet but don't really feel as though there is actually problem with any of my teeth, well not any I have experienced before anyway. It is just a kind of background ache so to speak.I have not really tried a low carb diet. I have been attempting slimming world. I will have to research it more.My GP recommended Kefir and I have been taking some everyday for some months but it does not really seem to have improved things a great deal.

PMRpro profile image
PMRproAmbassador in reply toValleysBoy

I have a blurry patch in the centre of my vision - almost as if there is a greasy fingerprint on my glasses. It also comes and goes and I can often get rid of it by screwing up my eyes. It was identified by my superb optician (sadly for his patients, now retired) as a floater. It improves on higher doses of pred - I've been at 15mg for a while and just realised I haven't noticed it for ages!!

SW is very good and people have lost some weight using it - however, it is often a bit carb heavy for patients on pred. There is a good scientific basis for our pushing low carb here - it not only helps the weight problem but also reduces the risk of developing pred-induced diabetes.

ValleysBoy profile image
ValleysBoy in reply toPMRpro

Thanks. My blurry patch thing sounds pretty identical to what you describe. Did your optician put it down to the pmr or pred?Will have to look more into the low carbon diet. SW suits me because of not needing to weigh or measure things but may not be helping me pred wise. I have been borderline diabetic for years and so far, touch wood, the pred and my current diet has not pushed me over into full diabetes but my levels have stayed the same for which I am grateful. The gp is monitoring this and is keen to get my pred dose down, possibly by introducing methotrexate in the near future. Because of what I have read here and the thought of another lot of possible side effects I think I will try and resist this if I can.

PMRpro profile image
PMRproAmbassador in reply toValleysBoy

Neither - I definitely wasn't on pred and I don't think the PMR had appeared at the time either. He said they happen, more as you get older but no-one really knows why. Given his background (did research and got a PhD but found being a scientist wasn't as profitable as runnning an optician) I'll believe him.

The GP can't put you on methotrexate - needs a rheumy for that. Low carb needs no measuring and weighing either - you just lean what foods to avoid and wha tyou eat with impunity. This site is very useful:

dietdoctor.com/low-carb/foods

everyone is different - I have to get to very low levels of carbs to lose weight - maintaining is much simpler.

Sophiestree profile image
Sophiestree in reply toValleysBoy

My optician said he saw the floaters on my examination, I just didn't appreciate that they would move bang into the centre of my vision.It is still there but not as bad and I am getting used to it I suppose.

They can take several months to move apparently... although I am still waiting!

I have to have reading glasses for things a lot more now.

ValleysBoy profile image
ValleysBoy in reply toSophiestree

Thanks for your reply. I saw the emergency optician last night and Just an update on my eye problem, in case yours might have a similar cause, I had an emergency opticians appt at a local Specsavers, after speaking to my GP. (This is free in Wales). After 2 hours of tests drops and scans she told me the eye problem is being caused by a build up of diabetic fluid in the layers of my left eye which is what is causing the blurred section of my vision. I was a bit taken back by this as I have never been into the diabetic range, and in fact was tested about a month ago and was 5.1 which is still in the prediabetic range it has been for years. The optician has sent a letter to this effect to my GP so I must wait to see what he will want me to do about it. I have to go back to the optician in 6 weeks for further checks and scans. Definitely no signs if TA/GCA apparently which is good news.

Sophiestree profile image
Sophiestree in reply toValleysBoy

Wow, that's really good you went. Did they say what you can do about that?Will it subside? Or do you need to medicate for something like that?

ValleysBoy profile image
ValleysBoy in reply toSophiestree

I am not sure. I will have to wait until GP contacts me once he receives the letter from the optician.

Sophiestree profile image
Sophiestree in reply toValleysBoy

well I hope he gets the letter quickly so that you can find out what treatment you could have.

Avadip12 profile image
Avadip12

Good morning , the frequency problems along with the nose problem way be related to the stimulation the pred gives us. Has your Dr checked your Thyroid function. Hope you get your eye sorted soon , glaucoma can be responsible for the other symptoms good luck Gill

ValleysBoy profile image
ValleysBoy in reply toAvadip12

Thanks for your reply Gill. To be fair my gp does a whole bank of blood tests roughly every 6 months so I think he will have included thyroid function but I can check next time. My eye is really the thing that's annoying me at present so I hope I can get some answers.Have requested a phone appt with my gp later today so will see what he has to say.

Pippah45 profile image
Pippah45

Alendronic Acid contains Aspartame and I have a lot of difficulty with that! It might be worth swapping to something else or just eating a calcium rich diet.

I have GCA and have experienced that feeling of a smudge on my specs - quite disconcerting I have found it too. I am almost 2 years in and with help from this forum with reducing slowly I am now down to 7.5 mg of pred with a few hiccups from reducing too slowly. I am now determined to go at my pace to get there in the end.

ValleysBoy profile image
ValleysBoy in reply toPippah45

Thank for your reply. I am afraid if it is down to aspartame then I an really in trouble as I use sweetners in my tea and coffee and drink diet drinks all of which contain it. I have done this for many many years in the past without any effect that I had noticed so did not think the pmr would have changed this. Others have suggested I might need to exclude things one by one from my diet to see if some of the problems are caused by what I am ingesting This might be a good thing to check out in case it is a culprit.

Karenjaninaz profile image
Karenjaninaz in reply toValleysBoy

Any substance, any drug, food, plant, chemical can turn on us at any time despite years of successful ingestion. My mom grew up in Estonia where fish was her primary diet; in later life she developed an allergy to shrimp.

ValleysBoy profile image
ValleysBoy in reply toPippah45

Sorry I meant to wish you luck with your own struggle. Hope you get the pred down slowly but surely.

Pippah45 profile image
Pippah45

Oh dear to your Aspartame habit! Have you researched it ? I won't say any more as I tend to get carried away! Very best of luck with everything.

Hello Steve. I have PMR with a friend who has exactly your head and throat symptoms, and she has a little heard of automimmune disease called Myasthenia Gravis. You have the classic symptoms of MG Myastheina Gravis. It attacks the synapsis between your voluntary muscles and nerve messaging, causing your swallowing muscles to be weakened, hence dribbling, your cough muscles to be weak so inability to clear mucus, your jaw and teeth aches because these muscles are weakened, causing dull headche, and most importantly MG causes your eye muscles to be weak causing your eyes to be out of focus and very often double visioned . Like her, a lot of MG sufferes discover a smudge on their glasses is actually an eye problem. Please look on Health Unlocked Myasthenia Gravis and you will get all the help and advice you need to get a diagnosis and treatment. if this is your condition.If it's MG you will need to see a Neurologist urgently. The Myastheina Gravis Association is invaluable and will guide you to all you need to know to see if this is what you have. I am not a professional Steve, my friend thought she had GCA and was being fast tracked through A & E, when her Rheumatologist suggested MG, spoke to her Neurology collegue, who suspected MG, arranged EMG and RNS testing which confirmed MG. Can also be confirmed with blood test and it can be your Thymas Gland (in your sternam which produces T cells) causing MG.

At times Steve, I feel we have four jigsaw puzzles all thrown in a heap on the table, and the lids are hidden, so we have to sift unguided through our multiple symptoms and side affects, separate them out and discover what we are actually dealing with: PMR, Pred side affects, GCA and MG.

My friend took 4 sheets of A4 and wrote separtely her symptoms for PMR, Pred side affects, GCA and MG, and her MG symptoms fitted the profile perfectly. Your head and chest symptoms fit the MG profile Steve. I pray this will be of help to you, and tht you will get diagnosed and medicated as soon as possible if it proves to be the MG case.. Sadly, because MG is a rare autoimmune disease, very few Medical people, GP's, Nurses, Health Care people, have ever heard of Myasthenia Gravis . You'd need to be seen by a Neorologist. Kind regards and hope you will find the answer if this is not it... Polly.

ValleysBoy profile image
ValleysBoy in reply toPollynolongerinagony

Thank you for this information Polly I will indeed check things out as soon as possible as the symptoms certainly fit. I have a telephone appt with my gp later so will mention it to him.Many thanks

Steve

Pollynolongerinagony profile image
Pollynolongerinagony in reply toValleysBoy

Steve there is real hope for you as MG is treated with a tablet that fills the synaptic gap and lets your nerves communicate with your muscles, so relieving the symptoms, and muscle weakness (it's not fatigue). MG can affect your lips and tonguewhich can give you slurred speech, and can affect your throat muscles layrnx and pharynx which can cause a husky voice when your muscles get tired and weak. MG can affect your arms and legs which tire easily when you use them and become weak, but most important symptom to watch out for is the thoracic muscles, lung, diaphram and oesohgus as when they weaken it cn feel difficult to get air into your lungs and become an emergenty. I am not saying this to frighten you Steve, but to arm you in front of the Dr today, he must act promptly, take this seriously and get you to a Neurologist pronto for testing. And obviously if you ever did have these breathing symtoms (heaven forbid), you ust ring 111. It never hurts to mention MG as they will not think of it themselves, because it is a rare autoimmune disease. I wonder if you have had your life saving Covid vaccination yet, as, please be aware, my friend's any symptoms worsened a bit when her system was put under duress. She's so grateful to have been vaccinated! as am I. Good luck and please keep me posted. Polly.

Karenjaninaz profile image
Karenjaninaz in reply toPollynolongerinagony

This is interesting. I did indeed see many cases of myasthenia gravis in my medical career working in a large teaching hospital in New York City. I don’t know about now but a thymectomy(removal of the thymus gland) gave relief.

Pollynolongerinagony profile image
Pollynolongerinagony in reply toKarenjaninaz

Hello Karenjaninaz, thankyou so much taking the time to reply to my post regarding Steve's worrying symptoms. NORD the National Organisation for Rare Disorders states that in USA, in 1985 the rate of PMR cases was 50 in 100,000 people, and in MG cases was 14 of 100,000 people. They are both rare autoimmune diseases, and numbers have increased over the years. On this PMR Forum, of the 50 replies to Steve today only I mentioned MG. Sadly, even today, there are many personal accounts on Forums like HealthUnlocked (penguines and faithhope241 stories) and Myaware (Joelles's story), of people who went on a journey of great stress, pain and trauma in search of a diagnosis and medication, myself among them, due to not being readily able to get in front of the right person with consumate knowledge of their specific rare disease. MG is even called the Snowflake Disease as no two cases are alike. One poor soul (in the UK) recently posted it took two years to get an MG Diagnosis. However, it is truly of some reassurance that one such Medic as yourself has indeed seen many cases of MG in NY, and I pray that Steve will have an acurate diagnosis and treatment path, following his Doctor's call this afternoon. I'm sure we all wish him well.There is evidence that 'the thymus gland plays a role in myasthenia gravis. About 15 percent of people with myasthenia gravis have a thymic tumour, called a thymoma, and another 65 percent have an overactive thymus, a condition called thymic hyperplasia.'

kind est regards, Polly.

If you do have MG Steve, your very best ally will be 'Myaware' they have incredible help. So be useful for you to Google when you are in research, learning mode. Good luck with the Dr.

Slosh profile image
Slosh

I'm sorryy to read about your difficulties.I also have the following: I have also started to get aches in my teeth and a dull kind of headache which seems to hang around a lot of the time - it could be inflammation.

As far as the bladder/bowel is concerned - I have developed numerous food sensitivities since been on Pred and that could possibly be teh case. When I have a reaction my bladder is irritated.

ValleysBoy profile image
ValleysBoy in reply toSlosh

Thanks for your reply. Yes I think after nearly 2 years of similar symptoms I have at last got used to putting up with them. Getting up 3 or 4 times a night is still my main problem but I think I am at last adjusting to the new sleep pattern as well. I hope things improve with you in the near future. Cheers Steve

Dambusters profile image
Dambusters

I am female aged 76. This could have been written by me, except for the headaches. I have an eye appointment with a specialist at the end of April

ValleysBoy profile image
ValleysBoy in reply toDambusters

Thank you for your reply. I know it is crazy but it is good to know that some other people are suffering similar symptoms, although I obviously wish we were not. I also have an eye appt with a specialist in April. Let's hope we both get some answers. Cheers Steve

luv2read profile image
luv2read

Very recently I have experienced the same eye symptoms. I’ve been to three eye doctors, one said macular degeneration and the other two said CSR. CSR can be caused by long term prednisone use. You might want to research it. I was diagnosed with GCA in November of 2018 and have been on prednisone for the entire time. Good luck!

ValleysBoy profile image
ValleysBoy in reply toluv2read

Thank you for your reply. I will certainly research this.

ValleysBoy profile image
ValleysBoy in reply toluv2read

Hi againJust an update. I saw the emergency optician last night and after 2 hours of tests drops and scans she told me the eye problem is being caused by a build up of diabetic fluid in the layers of my left eye which is what is causing the blurred section of my vision. I was a bit taken back by this as I have never been into the diabetic range, and in fact was tested about a month ago and was 5.1 which is still in the prediabetic range it has been for years. The optician has sent a letter to this effect to my GP so I must wait to see what he will want me to do about it. I have to go back to the optician in 6 weeks for further checks and scans. Definitely no signs if TA/GCA apparently which is good news.

Have at last got recieved a telephone appt to speak to a Urologist in early April about the possible bladder problems so after all this time I might get some answers as to whether it is the pred or something else causing those problems.

Like I said before I am very grateful to you and others on the list for all the help and insights.

Cheers

Steve

Fasttrack profile image
Fasttrack

Hi Valleyboy. Going to the loo constantly is, i think, a side effect of pred. I have it ++ and I only take 5mg a day. Don't know about the rest of your symptoms - but don't forget you are getting older so could be just what you get with old age. Don't assume an eye specialist will know about GCA. I went to one before I was diagnosed and told him about the classic GCA symptoms I had but GCA was not mentioned by him. Good luck!

ValleysBoy profile image
ValleysBoy in reply toFasttrack

Hi Thanks for your reply. I agree it could be age related and I am now on a waiting list to see a urologist to check things out. However it seems strange to me that this started about a fortnight after I started taking the pred.I got to see an optician last night and after lots of tests and several eye scans the optician said she thinks my problems are caused by a diabetic fluid build up between the layers of the eye which is causing me problems. I was surprised as although I have been pre diabetic for several years I have never gone over into the diabetic range. This was confirmed by blood tests about a month ago. The optician says that this can happen in the prediabetic stage. So she has written to my GP and I have to see what happens next. Then go back to the opticians in 6 weeks.

Fasttrack profile image
Fasttrack

Thanks for this. I meant the going to the loo all the time is pred related but was referring to all your other problems, like eyes etc that could be age related. Anyway, glad the eye people are on it.

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