My PMR and GCA story so far...

[MiniSpec]

I've had GCA twice so far, and I think I'm going down with it again at present.

I've had PMR since October 2009, when I began to get a constant and increasingly painful backache after having a very bad case of the flu. The backache soon spread to my shoulders and by the end of 2009, I had to use a walking stick in order to walk anywhere. My whole body became stiff and painful, and I was living on powerful Solpadine painkillers with Codeine that I had to take every day in order to be able to go to work, let alone do anything else.

In February 2010 my GP referred me to a specialist, and after he tried me on several different tablets he eventually gave up and reluctantly put me on Prednisolone in July 2010. The effect was almost instant. The third day after starting on the medication I was leaping around like a teenager, and couldn't believe how quickly the pain and stiffness had gone. It was as though my life had just been given back to me again after the suffering I'd endured since the previous October. The only downside was tinnitus. It started the second day after I began the medication and it's with me still, 13 years later.

For me the tinnitus consists of loud jet engines in both ears, but louder in the left ear than in the right. Most of the time I'm able to ignore it, but when I'm tired or run down, the tinnitus gets louder and much more intrusive than when I'm feeling well, or I'm very busy. My hope is that if/when I finally do come off Prednisolone, the tinnitus will fade away. I hope it does because over the last two years my hearing has deteriorated quite markedly, and the tinnitus does actually get in the way of me being able to hear what people say.

As for my Prednisolone dosage, I started on 15mg per day, and gradually reduced that over the next 18 months to 11mg. However, when I started to reduce the dosage to 10mg per day I began to get a very bad headache that seemed to be along one side of my head. As well as the pain I noticed that the skin on my scalp also seemed to be very sensitive to the touch. Furthermore, painkillers appeared to have no effect on either the pain or the sensitivity.

I went to see my GP to see if he could advise me on what to do about this constant pain that couldn't be controlled with painkillers. He thankfully realised that my symptoms were those of GCA and immediately put me on 60mg of Prednisolone per day. Happily this overcame the symptoms very quickly and within a couple of days the pain had faded away altogether. However, this left me with the problem of taking a vast amount of Prednisolone each day.

I began to reduce the dosage after two weeks, and over the next two years reduced it down to 11mg once more. As you can imagine, I was apprehensive about reducing the dosage to 10mg in case the GCA returned. However, I was able to slowly reduce the dosage by taking 10mg once every three days, then once every two days, then every other day, then twice every three days, etc.

With me now taking 10mg per day I stayed at that dosage for a couple of months to stabilise my system, then tentatively began to reduce the dosage to 9mg per day. Unfortunately this triggered the GCA to return, and my GP had to increase my Prednisolone to 50mg per day to overcome it.

Since then, over the last 9 years or so I've successfully reduced my Prednisolone dosage down to 3mg per day without any further complications. Each time I reduced the dosage I found that I temporarily had to take increased amounts of Solpadine Max tablets to control the pain, but over time my system stabilised and after several months on each dosage I've gradually reduced it once more.

Up until this week that is! It's now Sunday Nov 20th, 2022, and I'm sitting here writing this because since yesterday I've been experiencing the same symptoms that I've had twice before. The sudden onset of a powerful headache along one side of my head (left side), the inability of painkillers to control the pain, and an increased sensitivity in the skin of my scalp along the left side. So I think I may be experiencing the onset of another bout of GCA, and if it doesn't subside by Monday I'll have to arrange an emergency appointment with my GP to discuss the problem, and possibly increase my Prednisolone dosage once more.

I must admit it's not something I'm looking forward to. I had hoped to be able to come off the Prednisolone altogether by the end of 2023, but if I have to revert to massive doses of the drug to overcome GCA again then it'll probably mean I'll be stuck on the drug till I die, as I'm 72 years old now, and don't expect to last much more than another 10 years at most, before shuffling off this mortal coil. However, I am intrigued by the mention of a new drug, Tocilizumab (TCZ), which seems to have been effective for others with PMR/GCA, and if I am having a flare up then I may suggest to my GP that I'd be willing to try the new drug instead of increasing the Prednisolone.

Wish me luck!

[DorsetLady PMRGCAuk volunteer]

I do wish you luck….you seem to have been very unlucky to get GCA recurring as you have. Most of us just get it once (and that’s bad enough).. but to have to return to high doses again I do sympathise.

As for TCZ, you need to have a Rheumy consultation to request authorisation, GP cannot, so hopefully yours will refer you as a matter of urgency. But you should also be aware that under current NICE guidelines authorisation for the drug is only for a 12 month period for the treatment of GCA. But certainly worthwhile mentioning.

Please let us know how you get on…

[MiniSpec in reply to DorsetLady]

Will do. I've been told by my GP to sort out a specialist appointment as I've been on Pred for 12 years, and I now have an appointment booked with the Rheumatics department at Barnet General next May. So my general condition is not going to be dealt with quickly, but I may have to push forward with the GP if this current headache is caused by GCA, as I am terrified of losing my sight.

At present I'm okay for driving and for flying my microlight aircraft, but if I lose any sight in either eye I'll definitely have to give up flying, and may have problems being able to drive as well. That would be a disaster as I rely on being able to drive my car in order to do just about anything away from the house, and at my age (72) I don't have many years left to enjoy my hobbies, so I want to make the most of my remaining time while I have the health to do so.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

I lost all sight in right eye pre diagnosis in 2012 - never stopped me driving (apart from a couple of months while brain adjusted to change ).

I also had cataract replacement in left eye in 2014 -and at an eye test a couple of years ago the optometrist told me my remaining sight would pass the eyesight test for flying - so don’t give up on anything.

I can understand everyone is concerned about losing sight, but it’s usually pre diagnosis-rare once in the system and on Pred. Won’t say never, but very rare.

Have a read through this -and stop being terrified -

healthunlocked.com/pmrgcauk...

[jinasc in reply to MiniSpec]

That appointment is too late, suspected GCA is supposed to be fast tracked. If you have any vision problems, eye blurring on and off etc off to A&E pronto.

Don't think much of your GP to accept such a long waiting time when they know you have already had are are having problems.

[MiniSpec in reply to jinasc]

I'm not sure whether my GP is aware of the appointment as I made it online directly through the Royal Free website. Furthermore, our GP practice has changed hands very recently, and a whole new team of doctors are now trying to make sense of the patient notes they've inherited from the previous incumbents of the surgery.

If the headache doesn't ease off over the next day or so I'll definitely contact the surgery and make it clear that I need an emergency appointment. However, there is a possibility that what I'm suffering from is merely an extreme form of eye strain.

Due to problems with pain behind my left eye, I recently had an eye test and for the last four or five weeks have been wearing new glasses. These seem to have eased the eye strain I previously suffered from, so I was somewhat surprised when I suddenly developed a powerful headache this weekend, along with shooting pains behind my left eye when I shifted focus or moved the eye. However, I have an element of doubt regarding the symptoms I'm experiencing due to the previous shooting pains behind my left eye from eye strain before I changed my glasses.

It could just be that I've overstrained my eyes through constant reading, or it could be the first appearance of GCA symptoms. As such I'll give it till Tuesday or Wednesday to see if the symptoms continue or recede. If they continue then it's full speed ahead to get to see a specialist, but if the symptoms recede then I'll just carefully monitor my general health and eyesight for any changes in the future.

Meanwhile it's early to bed time for me so that my eyes get rested as much as possible, and I'll try to catch up tomorrow on any other replies to my original post.

Many thanks to everyone who has replied to my post. I am very grateful for the information you've all given me, and if things don't improve then I'll definitely act on the advice you've offered.

One more thing. Living as I do in North London, I see there are two groups that meet locally to where I live. So I'll see about joining one of those groups in order meet up with others who are on their journey through this disease. That way we can discuss treatment options, etc, for the future.

[jinasc]

I want you to read this and print it off and take it to your GP and then your Consultant.

Patient Involvement of the 8th Cranial Nerve

pubmed.ncbi.nlm.nih.gov/314...

this relates to GCA and the involvement of Tinnitus. It was released just before Covid struck and it is quite possible neither of your medics have seen it.

AS Dorset Lady has said already - Your GP cannot prescribe TCZ only a Consultant Rheumatologist and s/he has to make a case for it. Me, I think you would be successful.

You need to fight your corner - and just remember that although you are 72, I am 84 so don't even think like that.

Now I am going to say, some children start on pred as low as the age of 5.....without it they would not be able to live. At 72 if you are 'stuck' on the amount of pred, hopefully around 5mg for the rest of your life you should not worry about the pred.

I would also ask your GP for a short cortisol test (test for adrenals glands).

Tinnitus their is help out there so here are two starters for ten to read.

tinnitus.org.uk › tinnitus-treatments

and

nhs.uk › conditions › tinnitus

So off you go and see your GP and tell the person who answers the phone, that you need to see a GP as an emergency appointment do not be fobbed off.

Come back and let us know how you get on.

[SnazzyD]

Hello there, I have no idea if this is a flare or not but I would say, once you have had GCA, it’s worth making sure your sternokleidomastoid muscles are in tip top condition. I have scared myself into having a GCA flare many times but it was only SKM tension because my Bowen therapist was able to relive it very quickly provided I kept up my end of the bargain with regular attention to my posture and tension. It gives me almost the the same symptoms as GCA and be very painful, with painkillers not really helping, when the tension has built up. As I said, this may be a flare, I don’t know, but this is something you can do to avoid misdiagnosis.

physio-pedia.com/Sternoclei...

healthline.com/health/stern...

[PMRpro Ambassador]

TCZ is available for relapsing GCA - so you do qualify I would think. However, your GP won't be able to get it for you, you must have a rheumy for that.

If you have GCA then the rheumy appointment should be an emergency - and that would be up to your GP to refer you. I don't know if the Ryal Free has a GCA fast-track set-up - I think there are people on the forum who are under the Royal Free - I'm sure they will tell you of their experiences.

[SheffieldJane]

I would definitely try for Tocilizumab in your case. It may well do the trick. You’ve been unlucky and the initial taper to 10 mgs was too fast in my view. Good luck. Let us know how you get on.

[MiniSpec in reply to SheffieldJane]

You're probably right about the initial taper. However, this was over 10 years ago, when I was only just into my 60's, and was feeling relatively well due to the Pred. So I was happy to try to reduce the meds as I'd been advised that the higher the dose, the more calcium would be leached from my bones.

I've since been advised by another GP that once the Pred dose goes below about 7mg per day, you don't need to worry too much about calcium loss and bone density. However, I have noticed that if I've missed my Alendronic Acid for more than two weeks (as happened one year when I went on holiday and forgot to take them with me), my finger nails become very thin and weak. So I keep taking them religiously, along with my chewable calcium tablets, as I don't want to suffer any weakness in my bones.

I'll keep you all informed as to what happens over the next few months, but meanwhile I'm going to contact one of the local groups and see if I can go along to one of their meetings in order to discuss my condition and how best to treat it.

Many thanks

[Ella1200 in reply to MiniSpec]

Thanks for writing a great overview of your history with GCA- it sounds like a long road and I’m not surprised given the way GP clinics are run these days that it’s challenging for them to get full oversight and clarity on your situation. Can I suggest a few things I picked up recently from helping a family member in a similar situation ( in her case GCA is not diagnosed but she has been on steroids ):

1) write a concise chronology of your condition detailing all important/ relevant tests etc and medication doses , even the name of the doctor you have dealt with- register this important document at your clinic so it’s added to your notes.

When a new GP comes along it’s much quicker for them to get on the same page as you. The most important part of the chronology is the most recent and in my case I even requested at the end what help I expected in terms of help from the clinic ( admission to AECU for triage).

2) if possible try to get bloods done for magnesium ( can get leeched through steroid use) and vitamin D and any others GP may suggest. Magnesium deficiency can exacerbate all / any symptoms

3) re: TCZ , pretty sure you could have asked for this the first time already you relapsed/ steroids didn’t fully do the job- please let us know if it’s prescribed and if so how you get on.

Wishing you the best of luck with your journey and meanwhile keep enjoying life

Lu

[PMRpro Ambassador in reply to Ella1200]

Blood magnesium levels can be misleading. Magnesium is stored in the cells and the blood leaches it to keep the blood level where it should be so cellular levels can be low even though blood levels look fine.

[Stkeyna]

Good Morning, Well I am in a similar position to you in that I have been suffering from PMR and GCA for 13 years now and I am aged 71. However, I am wondering if you have been scanned to show the GCA is still there. I do feel, that some people who have been on pred. long term, may be suffering from prednisolone toxicity rather than their original complaint of PMR, GCA etc. My symptoms have always been headache, nausea, feeling unwell and a certain dizziness which are similar to the side effects of too much pred. This is why it is difficult to tell what is going on. I am surprised to read that your GCA has returned as I had been told by a top rheumy that, after a certain number of years, it would not present itself again. However I do sympathize with the thought of losing your eyesight and I would present yourself at a hospital. Or indeed just simply go and get your eyes tested at any opticians - they should be able to offer some advise!! I do note that you have managed to get down to 3mgs and I have never got anywhere near that level so we differ there!

When I had PMR then it would be neck shoulder and thigh muscle pain but that drifted away after my first year when I got GCA. I have been scanned quite a few times and the last scan stated there was only a residual amount of GCA showing. However, at the moment I am stuck on 12 mgs of pred. and I can't seem to get down much lower. I am now being considered for tocilizumab (TCZ) and I believe, like yourself, that the drug has proved successful in many cases. Although I will add that my consultant is concerned about its possible side effects

Anyway very best with it all!

[MiniSpec in reply to Stkeyna]

Stkeyna,

Thank you for your reply. It's good to know how other people are coping with the PMR, etc. For myself, I must say that since having a very uncomfortable day on Saturday, with lots of shooting pains behind my left eye, and tenderness on the left side of my scalp, things have calmed down a great deal. I've had two very early nights in a row, and these seem to have helped a lot. The shooting pains have stopped, and the tenderness has faded as well, so I'm not going to rush to the GP or the A&E just yet. Instead I'll monitor the situation very closely, and if I find that the symptoms return I'll be off like a shot to get it diagnosed and treated ASAP.

Regarding the shooting pains. I had a sight test only a couple of months ago due to occasional shooting pains behind my left eye. The woman I saw told me that my right eye had deteriorated a little, and my left eye was therefore having to compensate. This put strain on the left eye which resulted in the pains. So I ordered new lenses for my frames, and for the last six weeks or so I've been wearing new glasses. Since getting them the pains in my left eye had gone completely, so I was very surprised and dismayed, when I suddenly started getting shooting pains behind my left eye again.

Because I'd only just had new glasses and they'd been working well, it occurred to me that the only other thing that could cause such pains would be GCA. Also, as I've had GCA twice, I recognise the kind of changes it brings on, and these corresponded very closely to what I was suffering on Saturday. However, as I said above, since then I've had two very early nights and combined these with strong painkillers. There's the main difference. When I previously had GCA, both times painkillers were completely ineffective, but this time I've found painkillers worked. As such I'm having doubts about what could have caused the eye pains, and I now think it could just have been a major eye strain from too much reading and not enough sleep. Don't worry, I'll be monitoring this situation very closely indeed, and any further pains will put me into instant action mode, but for the time being I'll just relax as much as possible, keep my reading down to only a few hours per day, and make sure to get enough sleep.

Regarding the GCA, I was led to believe by my GP that it was caused by white blood cells blocking the small arteries and veins around the skull, and thus depriving the eyes of blood. Increasing the dosage of Pred somehow dispersed the white blood cells and allowed the blood to flow into and around the eyes once more. If this is not the case then obviously I've been misled, but if what he said was anywhere near true, then lowering the Pred dose allowed the white blood cells to accumulate. From my own experience my theory is that the percentage the Pred is lowered at any one time has an effect on whether the white blood cells will gather and cause pain.

So if you lower the Pred dose by a large percentage the body notices this and the white cells increase quickly. However, if you lower the dosage by a very small percentage each time, the body will adjust to the lower Pred level on its own without triggering the immune system. Going by this theory I've been very careful when lowering my dosage to do it very gently. This means that to go from 5mg per day to 4mg per day I did the following. One day 4mg, then three days at 5mg for at least a month, then one day 4mg followed by two days at 5mg for another month. Then one day at 4mg followed by one day at 5mg for another month. After this the next step was to move to two days at 4mg followed by one day at 5mg, and so on, slowly decreasing the number of days on 5mg until after another couple of months I was on 4mg all the time.

Doing it this way allowed my body to adjust to the lower dose, and if I noticed any increase in pain or stiffness, I stopped reducing the dosage until the pain and stiffness diminished.

Interestingly, I had a telephone conversation with a GP at our local surgery (we have several GPs there, so it's pot luck as to who you'll get to speak to) who wanted me to drop from 4mg to 3mg without regard to the percentage drop. So I told him about my previous history with GCA, and how lowering the dosage by 10% had triggered it the first time, and by 9% the second time. Once he'd listened to my explanation and it had sunk in a bit, he backed off his insistence and instead asked me to continue at my own pace. However, I did notice that the next prescription I got from the chemists had words on it to the effect "Reduce dose as per agreed". As it is I am keen to reduce my Pred to zero if I can, so I am happy to try and reduce the dosage whatever the GP says, but if I find that I go too far or too fast, then I'll back off immediately and tell the GP why, as I don't want to trigger GCA again. It would completely negate all the hard work I've done so far if I had to go back up to 50mg per day again.

[PMRpro Ambassador in reply to MiniSpec]

"I was led to believe by my GP that it was caused by white blood cells blocking the small arteries and veins around the skull, and thus depriving the eyes of blood."

Not exactly - and GCA only affects arteries, never veins. The inflammation causes cells in the blood vessel walls to joint together and form giant multi-nucleate cells which make the wall thicker. It has nothing to do with blood cells, red or white. Nor is the problem in blood flow to the eyes - it is the blood flow to the optic nerve that is compromised. It is similar to a stroke in some ways, there is a lack of oxygen being supplied to the nerve so it becomes damaged and, if the lack of oxygen is severe or prolonged, can die. Nerves rarely regenerate when damaged so the loss of vision caused is irreversible. In very rare cases the blood flow to the retina may be compromised. But it i very rare.

[MiniSpec in reply to PMRpro]

Thank you for clearing that up.

I didn't know it was nothing to do with the blood cells themselves, nor did I know it was the optic nerve that got damaged. Now that I know these things I'll have more accurate ammunition if I ever need to argue for a particular treatment in the future.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

The optic nerve is only damaged (starved of blood/oxygen) if the ophthalmic nerve is narrowed by the rogue cells which have been allowed to grow out of control (hence the name Giant Cell Arteritis).

Unfortunately because that artery is deep within the head, it cannot been seen by the naked eye, nor biopsied like the temporal artery which is always quoted as a symptom.

In the picture attached you can see that the ophthalmic artery is lighter in colour showing it’s further away from surface than others.

In my case the temporal artery was not affected, so if I’d had a biopsy it would probably have been clear, but I most certainly did have GCA, and because my ophthalmic artery was affect, lost sight in one eye.

Arteries in head

[PMRpro Ambassador in reply to MiniSpec]

Why would you know - though your GP should have had a better idea than that!

[christi48]

My heart aches for you and all you have endured and I do wish you luck and success and a few miracles. Sending you hugs.