Confused

[Azulmarino]

Hello to all,

I am a 61 year old man living in Madrid (Spain).

At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache.

I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged and fortunately I have recovered my vision.

At the hospital they did a head CT scan, echo dopler of the arteries in my head, whole body pet-tac, I have to admit that in Spain we have one of the best health services in the world.

They did not do a biopsy of the temporal artery because I had already been given corticoids in my vein.

At home I continued with oral corticoids, 60 mg. and at the moment I take 5 mg. a day and one injection of Actemra (Tocilizumab) a week, in Spain we are lucky, Actemra is free indefinitely as long as you need it.

My entire clinic is compatible with GCA but all my test results are normal and there are no signs of inflammation of any kind.

In my last consultation with my rheumatologist, he tells me that he is beginning to doubt that I have GCA.

I would be grateful if you could give me your opinion on my situation, I am very confused.

Thank you very much.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Your blood will come in as being normal -that’s due to both the prednisone and the Actemra - not because you don’t have GCA…

Your doctor may not realise that regarding Actemra -but they certainly should be aware that the steroids reduce inflammation enough so you have normal bloods -it’s what they are designed to do!

[SnazzyD]

Did they give their reasoning? I had the same comment at one point after about a year because I hadn’t relapsed. Another doctor spoke of “when” I relapse and what they will do next as if it happens to everyone with GCA. All my tests were ok either because they were performed after Pred was well under way or the GCA was not in the arteries that it is physically possible to check like the temple. My bloods were ok pre Pred which can happen in some people. The only thing that got me the diagnosis was my classic symptoms and rapid improvement on Pred.

It’s kind of frustrating because one can’t win. I know I had it because I had a short period when my coated Pred wasn’t being absorbed properly and the symptoms came roaring back while on holiday. Lucky I was able to work out why and act accordingly.

So what is their point? Stop all treatment? Stop Acetemra? Keep you on it because they are not convinced enough that it isn’t?

[Azulmarino in reply to SnazzyD]

Hello,

As my rheumatologist now doubts whether I really have GCA, I don't know whether to continue with the Actemra treatment, especially knowing the side effects it has.

I am afraid of losing my vision if I decide to stop the treatment.

For the last fortnight, I have had a headache again and I have had back pain, hip pain and knee pain.

My rheumatologist says it is probably osteoarthritis.

Thank you for your answer.

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

Well osteoarthritis doesn't give you a headache and intermittent sight loss...and the possibility of sight loss is paramount.. think you require a second opinion...

[PMRpro Ambassador in reply to Azulmarino]

I have been on Actemra for 2 years - I have no identifiable adverse effects. All drugs have side effects and most doctors consider the Actemra side effects preferable to those of pred, especially the high dose pred required ongoing for GCA,

Since when did osteoarthritis suddenly appear and cause headache? Is the headache similar to the headache you had before the sight loss? Did you have any osteoarthritis symptoms immediately before the GCA was diagnosed?

Actemra actually only works 100% for half of patients and that was abundantly clear from the clinical trials. There are 3 different mechanisms that can cause the inflammation in GCA and the other 2 do not respond to Actemra since biologics are very specific in their action, Pred is a broadband antiinflammatory so deals with all the mechanisms. In half of patients, a lower dose of pred is required ongoing to deal with these other causes of inflammation. I would wonder if the other pains are due to PMR since it manifests in quite a lot of GCA patients but only appears as the pred dose goes down However - Actemra would usually deal with much of the PMR inflammation too but like GCA, there is also some that won't respond to it entirely.

[PMRpro Ambassador]

"he tells me that he is beginning to doubt that I have GCA."

On what grounds? Was he the doctor who diagnosed you originally?

If he is basing it on the speed of your taper of pred - what does he think the Actemra is doing?

Given the symptoms you experienced, especially visual loss, your response to the textbook treatment with pred and so on, then he is skating on some rather thin ice dismissing that it was GCA. As soon as the high dose corticosteroid was administered, it is likely that later imaging was no longer accurate. If you have solely intracranial GCA that wasn't manifesting in the temporal artery, that would account for many of those tests being apparently normal.

And frankly - MY concern would be he doesn't know much about GCA and the use of Actemra: once you start using Actemra, your usual blood markers for inflammation are no longer valid since the way in which Actemra works means that the IL-6 that causes most of the inflammation is unable to attach to the receptors it requires because they are occupied by Actemra. No inflammation is created as a result and the ESR and CRP return to normal. Even before diagnosis and treatment with pred, up to 20% of patients have ESR and CRP that remain in normal range which often unsettles doctors,

In your place, I would be very grateful to a doctor who took the risk of permanent visual loss due to GCA seriously and treated you as if it were GCA - you have retained all your vision, it might not have been the case if you had not been treated so aggressively at the time. Once vision is lost in one eye, there is a 50/50 chance that sight will also be lost in the other eye within 2 weeks. It might be something else - but you still have your vision. That is a win.

[Azulmarino in reply to PMRpro]

Hello,

What you describe is the same as what I have told the rheumatologist, and he is still hesitating.

When I was admitted to the hospital, the diagnosis of GCA was made by a neurologist and he was very sure that it was GCA.

But now I am referred to rheumatology.

I think next week I'm going to go and talk to the neurologist and explain what's going on.

Thank you very much for your reply.

[PMRpro Ambassador in reply to Azulmarino]

I think that is a very good idea. There seem to be a lot of rheumatologists who are very averse to diagnosing GCA!!

Do let us know how you get on.

[Azulmarino in reply to PMRpro]

Next week I will tell you what my neurologist, who diagnosed me with GCA and had no doubts, told me.

Indeed, before I lost my sight, I had a headache and I had been suffering from pain compatible with PMR for several years.

Thank you all.

[PMRpro Ambassador in reply to Azulmarino]

I really think the runes fall on the side of PMR/GCA - and if nothing else, safety first is always called for, Vision is a very precious commodity.

[LemonZest11]

Just by way of a little reassurance, I have been on Actemra now for just over 4 years with no apparent side-effects, apart from a bit of belly fat that PMRpro so generously drew to my attention 🤣.

[Azulmarino in reply to LemonZest11]

I am reassured by what you say.

Thank you very much.

[Rugger]

I had Actemra for 2 years with no apparent side-effects. It was stopped only because in the UK its continued use is restricted by the NHS.

Best wishes to you.

[Azulmarino in reply to Rugger]

Thank you for your response.

I didn't tell you that I have been on Actemra for two weeks, suspended by my rheumatologist because I have a very bad cold.

I also told you that since I stopped taking 15 mg. of prednisone, the pains I had in my hips, lower back and knees have returned.

Do you think it could be PMR?

I am currently taking only 5 mg. of prednisone.

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

How quickly did you reduce from 15mg to 5mg? And yes, it does sound like PMR.

[Azulmarino in reply to DorsetLady]

Hello,

From 15 I went down to 10, from 10 to 7.5 and from 7.5 to 5mg. and additionally Actemra. I have the feeling that Actemra has no effect on me, although it is true that I have only had seven injections.

Maybe the effect of Actemra takes longer to be effective.

Thank you!

[PMRpro Ambassador in reply to Azulmarino]

My rheumy told me to allow at least a couple of months before starting to reduce the pred - it does NOT have an instant effect that is enough to taper the pred. There are also other mechanisms creating inflammation and half of patients with GCA who are put on Actemra are only able to get to about 8-10mg pred without a return of symptoms because Actemra only works on the IL-6 mediated inflammation. Biologics are extremely specific in their action - and the other inflammation requires an adequate dose of pred to manage. That is why a SLOW taper is still required at lower doses. Too many doctors are not fully familiar with the correct way to use Actemra, even when used from the outset.

[Azulmarino in reply to PMRpro]

I think you are right.

Tomorrow I will tell my neurologist who diagnosed my GCA. I remember him saying to me, white and in a bottle, it is definitely milk.

My problem is that my rheumatologist doesn't see it that way.

Thank you for your response.

[PMRpro Ambassador in reply to Azulmarino]

"white and in a bottle, it is definitely milk."

These days you can't be entirely sure I suppose - kefir comes in a bottle and is white! But I'd stick with your neurologist rather than the rheumy who is probably miffed he didn't have the idea first. We do see that quite a lot.

[Azulmarino in reply to PMRpro]

You may be right, my wife feels the same way you do.

Thank you very much.

[PMRpro Ambassador in reply to Azulmarino]

A woman of sense!!

[Azulmarino in reply to PMRpro]

I thank you all very much for your kindness and your answers.

I would like to ask you another question.

I am a very active person, I have been going to the gym four times a week for years, I also practice mountain biking and hiking, but in addition to everything I have told you, since I went down to 5 mg. of prednisone I feel very tired.

Do you think it could be related to the awakening of my adrenal glands?

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

Could be adrenals -but too low a dose of Pred achieved too quickly will also be affecting your illness…

Maybe moderate your activities for a while as well.., and maybe back up to 7.5mg Pred to see if that helps…

[Azulmarino in reply to DorsetLady]

Hello,

I had thought about it, going back to the 7.5 or 10mg dose, but maybe it would be wise to check with my neurologist who I am scheduled to see tomorrow, Monday.

Thank you!

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

7.5mg for sure... but if you feel happier for neurologist input - then ask their opinion on on that, and possibly 10mg.

Please let is know what's decided...

[PMRpro Ambassador in reply to Azulmarino]

How long had you been on pred before reducing to 5mg? It does take time for the adrenal glands to be suppressed enough to take long to recover.

But neither pred nor Actemra have any direct effect on the actual underlying disease process that creates the inflammation. They just deal with the inflammation. Even Actemra is only a very effective but expensive steroid sparer, having no effect on the underlying illness that continues in the background, still producing the inflammatory substancces. The IL-6 may not be able to act, but the other mechanisms are and that may be making you feel a bit as if you have a severe cold and fatigued. Higher doses of pred do tend to give you a boost, but it is a false friend, it has no substance.

[Azulmarino in reply to PMRpro]

Hello,

I have been on IV prednisone since December 3rd, 1g for three days, 0.5g for another three days. Then one week with 70 mg. All this while I was admitted to the hospital.

At home I was on 50 mg, 30 mg, 20 mg, 15 mg, 10 mg, 7.5 mg and now I am only on 5 mg.

Thank you.

[PMRpro Ambassador in reply to Azulmarino]

I think it IS likely your adrenal function has been suppressed right down to the 7,5mg dose and while in theory you should be fine at 5mg too, in practice we find lots of people already struggle a bit at anything below 10mg. At this stage we would say a slower rate of taper, certainly from 7.5mg, would have been a good idea to allow things more time to adjust. It will catch up but from now I would suggest not more than 1mg at a time and preferably 0,5mg at a time.

[Azulmarino in reply to PMRpro]

I think you are right

Thank you!

[Darcy2000]

wow you are very lucky to have such a great health system in Spain. I also have GCA and PMR . If you didnt have a temporal biopsy due to steroids to confirm diagnosis your Dr is still doing the the right thing by prescribing Actemra and steroids . Yes blood work is not an indicator of disease when you are on Actemra and Pred. Regardless as to whether the official diagmosis has been confirmed your Dr and the clinic seems to have covered all the possibilities.

[Azulmarino in reply to Darcy2000]

Thank you for your response.

I am terrified of losing my vision again.

I will let you know what the neurologist has told me.

[Rugger]

In 4 months you have reduced to a point that it would take some of us 4 years to reach, or longer! Definitely slow the taper of prednisolone. Many of us taper at 0.5mg / month, or longer.

We can't say if your pains are due to PMR - could it be DOMS with the gym sessions, biking and hiking? 😱 (Delayed Onset Muscle Soreness)

Hope tomorrow's discussion with your neurologist goes well.

[Azulmarino in reply to Rugger]

I too believe that the prednisone taper has been too rapid. My rheumatologist wanted to spare me the side effects and I followed his instructions, but it is true that I feel worse than before and I am afraid of a repeat of the vision loss.

Thank you very much!

[DogAgilityObsessed in reply to Azulmarino]

Why do they always talk about negative side effects and never the positive ones ie that it manages the horrible symptoms of PMR or GCA? It drives me mad!

Sorry I cannot add more to the excellent advice you are already receiving from some of the most knowledgable forum members there are. But welcome even if you wish you weren't here.

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

Side effects versus sight loss?

Rheumy needs to get real….and consider what is more important. Side effects can be reversed - sight loss not always - you were lucky first time around, not everyone is!

[Azulmarino in reply to DorsetLady]

Totally agree.

This is precisely what worries me.

Thank you.

[HeronNS in reply to Azulmarino]

It is true that very high dose pred can cause serious side effects, but Actemra enabled you to reduce quickly. What the doctor failed to realize, among other points already mentioned by others, is that the side effects diminish with the dosage, are very much less concerning below 10 mg, and although 5 mg is considered (by some doctors treating PMR) an ideal place to stop and rest for a while from tapering, even 7 or 8 mg usually have minimal side effects.

[Gcaexplorer]

I am impressed with the hospital in Madrid that treated you! I read that Spain has a superior health system. Would you mind sharing the name of the hospital? I will be visiting madrid in May and it would be nice to know where I could seek help if I need it. Thanks.

[Azulmarino in reply to Gcaexplorer]

Of course it is, it is the Hospital Universitario Puerta de Hierro. I also recommend the Hospital Fundación Jimenez Diaz, the latter is located in Madrid capital. I have also been seen there. I went there for a second opinion and they told me that they agreed with the diagnosis of temporal arteritis. This hospital is among the top twenty hospitals in the world.

These two hospitals belong to the Spanish public health system. I also have private health insurance but I preferred to use the public health system.

In Spain the best doctors in each specialty work in the public health system and they are also in private hospitals.

Both hospitals in the emergency department have doctors of all specialties 24 hours a day, 7 days a week.

You can see their web sites.

I hope I have helped you and that your stay in Madrid is fantastic and you don't need to go to any hospital.

[Gcaexplorer in reply to Azulmarino]

Dear Azulmarino,

Thank you so much! I look forward to visiting your wonderful country. It is a comfort to know your medical system is world class.

[Cubanurse49 in reply to Azulmarino]

Azulmarino, it is good to know that Madrid has such great hospital, I have read that there I is a high incidence of GCA in Lugo, my family is from Burgos / Santander.

[Azulmarino in reply to Cubanurse49]

Hello,

In the Community of Madrid the public health system is very good, not so in the rest of Spain, perhaps with the exception of Catalonia.

If I have read it too, it seems that in Galicia there is a higher incidence than in the rest of Spain. Some studies suggest that it may be genetic. It also seems that in northern European countries the incidence is higher.

[PMRpro Ambassador in reply to Azulmarino]

There is a distinct genetic link - but not hereditary, it is a set of genes, often linked with Scandinavian heritage, that makes it more likely that with a similar set of circumstances someone is going to develop GCA. The genes alone don't give rise to it - they must encounter a trigger which may be environmental, illness, trauma, stress etc before it happens.

[Gcaexplorer]

how is Seville?

[Pr0jection]

Hi, I don't want to throw a spanner in the works but were you tested for optic neuritis? This can cause problems with vision. I know this because it happened to me in the late 80's. I was put onto a high dose of steroids for about 4 weeks, then reduced gradually. It was successful to the point that I regained my peripheral vision in my left eye but not the central vision. All the best.....

[Azulmarino]

Hello everyone,

Today I finally saw my neurologist who diagnosed me with my GCA.

He tells me that he is sure I have GCA, and he advises me to change my rheumatologist, since he does not agree with his diagnosis.

He also told me to increase the dose of prednisone where he felt good, which was 20 mg, and to continue with the Actemra injections.

Thank you all for your support and advice.

[PMRpro Ambassador in reply to Azulmarino]

Now that sounds like a person of sense!!!!

[DorsetLady PMRGCAuk volunteer in reply to Azulmarino]

Agree with your neurologist and PMRpro…