Acute episode PMRGCA

[PMRHortons]

I’m new to this group I was diagnosed with PMR about 5 years ago and with CGA 2 years ago. I have had two episodes both treated with prednisone both started on 60 and reduced to 0 over a couple of years. Sadly I’m in an acute phase now which has gone untreated for about a month, I’m seeing my specialist on Saturday. He is going to put me on a new medication which he says has been having good results. I’m not sure what it is, I live in France and what ever the new drug is it is only licensed for my consultant to prescribe which is why I’m having to suffer with no treatment other than painkillers until Insee him. Has anyone heard of a new drug out there

[PMRpro Ambassador]

I imagine it may be Actemra/tocilizumab. However - what a load of tosh: it is to be used in conjunction with corticosteroids to allow the reduction to be faster, it is not approved for use alone as no trials have been done to see if it works without pred in the context of GCA. So there is no reason why they shouldn't have started you on pred in the meantime. Painkillers are useless for either PMR or GCA/Hortons - which is flaring? The PMR or the GCA?

We have a couple of members in France - where are you?

[PMRHortons in reply to PMRpro]

It’s the PMR, every joint is painful especially my shoulders and knees bit of a pain to get going in the morning. I think if I thought it was the CGA I would just start the prednisone myself. You are right about the painkillers they offer very limited relief if any. I live in Bussière-Galant which is about half an hour south of Limoges, in the Limousine. I have a blood test in the morning and see the consultant Saturday if it gets to unbearable I’ll pop into thé GP and see if she’ll kick of the prednisone treatment. I’m very lucky I don’t seem to suffer any real side effects which is a blessing

[PMRpro Ambassador in reply to PMRHortons]

I'm sure there is someone not a million miles from you and another lady on another forum lives not far from Limoges because that is where they go shopping!! Is it near Bellac? Pred brain - I always forget!

I'm surprised at the idea to use tocilizumab for PMR - I didn't think it was approved for PMR in Europe, just GCA. I don't know how private use of it works in France - it is very expensive.

[PMRHortons in reply to PMRpro]

Well I’m diagnosed with CGA as well as the PMR so I’m pretty sure he’ll use it for that reason. I’m really not to sure about the difference other than I get stabbing pain behind my eyes occasionally when things are bad. I had the biopsy and full Monty of tests before the diagnosis. Had to stay in hospital for 3 days to get them all in. Yes Bellac and Limoges are close Bellac is the other side of Limoges to me. About 50 minutes away

[YuliK in reply to PMRpro]

versusarthritis.org/about-a...

This is a good article to read.

You are so correct PMRpro...

Prednisone and other steroids so far are the only official treatment for PMR...

[PMRHortons in reply to YuliK]

I read the article it’s very informative thanks for sharing

[FRnina]

Hi PMRHortons. I'm in France too (45mins drive south of Clermont Ferrand) but have only had positive experiences here. My GP and specialist at the hospital stay in close contact . My GP also prescribes any medication in between specialist appointments- for example extra pred if necessary so I can do the dead slow taper (from this forum) instead of their standard one. They both let me take the lead for what I think I need: I mean, if I question a drug they will try to find a suitable solution together with me. I have PMR/GCA (2 years now) and started on the high dose pred (80mg) to protect eyes, then the usual monitored taper. Am also co-currently on Methotrexate (15mg). No bad side-effects. I think you should see your GP for some pred as PMRpro suggests and you can ask her/him about the new medication. The Methotrexate is prescribed to help with reducing the pred. Heaven forbid don't want to sound sexist but both my GP and specialist are young women- eager, friendly, helpful. They are very open to my input. I noticed that in the early stages when I was in hospital the OLDER male specialists were not approachable. I was just 'the patient' and only meant to answer questions, not ask them. Don't know if it's just a French thing. But it is an academic teaching hospital so I got looked at by some YOUNG male students as well- they were much more approachable and sat down with me to answer my (many) questions. Let me know if you need any help about the French system. How long have you been in France?

[PMRpro Ambassador in reply to FRnina]

No, much of Europe has a similar paternalist attitude problem - even amongst some older female doctors but some countries are worse than other. Strangely (or is it?) the further south and west the worse it seems to become! Here in northern Italy the younger doctors are much less so than further south but most of our doctors trained in Austria or Germany rather than Italy. Spain is very much so.

[YuliK in reply to PMRpro]

PMRPRO...You are living in a country where I understand from reliable sources, that medicine and hospitals are second to none....?

Yulik

[PMRHortons in reply to FRnina]

Good morning, thanks for the reply, I’ve been in France full time.since 2008. My specialist is good and open to answering any questions I have, he is an older gentleman and my GP is a younger woman and equally very good. They both have time for me and I never feel rushed, they put up with my terrible accent and if things get a bit difficult with the technical stuff they will throw in some English. Limoges is also a teaching hospital with very good standards. I have my sister over at the moment and after a couple of hours walking with her yesterday I’m feeling the effects today. Very stiff very painful everywhere so I’m going to see GP tonight to ask her to start the prednisone. I’ve read the article PMRPro sent which is very interesting and I’m confident the specialist i see Saturday will start the prednisone with the new medication. As you say it’s not worth suffering a few more days untreated. Thanks for the offer of support

[FRnina in reply to PMRHortons]

Bon courage! Let us know how you get on.

[PMRHortons in reply to FRnina]

I went to the GP yesterday having received my blood results. Problem everything is normal in the tests she has done, particularly CRP which is 4 it was 1 in November when last done but still in normal range. Don’t understand the last time I had this much pain was the first attack when my CRP was up at about 13. Any way GP does not want to start Pred until after I see consultant Saturday as she thinks he will want to do different blood tests and the Pred will affect the results. So suffering until Saturday I’m not sure what extra tests he can do and really don’t understand why bloods are normal but am in so much pain. Anyway just a few to go, going to have a lazy do nothing day and hope the rest helps.

[FRnina in reply to PMRHortons]

so sorry you have to put up with this much pain. The blood tests don't always match what your body is telling you. PMRpro and others here are knowledgeable and can fill you in better than I can. When you see the specialist on Saturday, go armed with your list of questions: he really should explain what tests he is doing and why. You probably know that your illness has 100% cover in France and that includes taking taxis to the hospital?

[PMRHortons in reply to FRnina]

Hi no I didn’t know about the 100% but I have full cover any way so I don’t think I would notice. I’m not very good at keeping track of these things. Would I need to notify anybody to make sure I am getting the cover do you know. I must admit my late wife was much better with this stuff than me.

[FRnina in reply to PMRHortons]

In France, PMR/GCA is an 'Affection de longue duree' (ADL) and gives right to 100% reimbursement ( including taxi transport). You can get information at ameli.fr or from the Cpam helpline (Cpam= Caisse primaire d'assurance maladie). They are your local state health insurance body dealing with reimbursements.

There is an expat publication called 'The Connexion' (connexionfrance.com) and they have a special-issue on healthcare in France. It's really useful and covers everything you might need to know. You can order copies on : [phone].

I'm 45 mins from the hospital so I need the taxi. Ask your GP to recommend a taxi company and when booking them say you need them to wait and bring you back- a round trip. Your specialist at the hospital must fill in a special form (Bon de Transport) and you hand this to the taxi driver. Make sure the specialist stamps and signs the form- the French are sticklers for bureaucracy!

I hope this is helpful. Good luck on Saturday

[PMRHortons in reply to FRnina]

Thank you

[PMRpro Ambassador in reply to PMRHortons]

It may be "in normal range" - but the normal range comprises the range of levels that will be found in 95% of the healthy population on the basis of testing some 10,000 people. It isn't a "normal range" for one single person. If YOUR normal level is 1, rising to 4 suggests it may be on the way up. They are a guide in this case - not gospel. And they often lag behind.

[PMRHortons in reply to PMRpro]

That’s helpful thanks, can you think what further blood tests one might expect the consultant to want. I’m tempted to start prednisone now as I have plenty. Would not want to though if there are further tests that could help and I would affect by taking meds now.

[PMRpro Ambassador in reply to PMRHortons]

I imagine a rheumy would want to look at a load of rheumatological tests - and I don't really know how pred affects a lot of them.

[PMRHortons in reply to PMRpro]

Thanks again, I guess I’m going to do as I’m advised and wait till I see him. If I get any info on tests etc I’ll share

[PMRHortons]

So I saw the specialist yesterday and he doesn’t think the problem is PMRGCA. So more blood tests and he has ordered a PET scan. He has started me on Naproxen 550 twice a day and Lyrica 50 at night. Started straight away and I have to say while things are not perfect I’m in a lot less pain than I was and I got a full nights sleep last night. So pending future results it looks like it’s not my auto immune this time. Bit diagnosed yet but looks like it’s rheumatoid arthritis this time. Have to wait for results and a return to specialist for confirmation after scan.

[PMRpro Ambassador in reply to PMRHortons]

RA is autoimmune ...

[PMRHortons]

Ok so I’ve had an armful of blood taken and all the results are normal , I’ve had a bone scan which is normal. I have a PET scan coming up on the 3rd July no one has said what they are looking for with this. Normally I think this is an examination for cancer so has me a bit scared. After initial pain relief with pain killers and anti inflammatory meds. Things are back to the start in terms of pain. Feels like I’ve got nails in all my joints my hands are very bad. My knees are very bad as well.

[Hidden in reply to PMRHortons]

Hi. Sounds like a busy time but try not to worry about a pet scan when rheumatoid arthritis is a possible diagnosis. That said, ring your Dr and find out why they want a pet scan. Imagination can be far more scary than reality...a lot of the time. Here is a link explaining how and why pet scans are used for RA.

healthline.com/health-news/...

[PMRHortons in reply to Hidden]

Thanks for the link and the quick response, the info is really helpful and reassuring.

[PMRpro Ambassador in reply to PMRHortons]

A PET scan is probably the ideal diagnostic imaging for PMR/extracranial GCA when got in before pred They are not that widely available and expensive so kept for the serious stuff like cancer which gives them a scary name but they are valuable for other things too. The tracer is taken up by any inflamed tissue - and PMR patients with extracranial GCA can look a bit xmastree-ish!