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[Mahler2]

On the 23rd of March 2020 I suddenly started with what I knew were the classic symptoms of PMR. My mother had the condition. We have recently retired to Mallorca and had not yet got our residency sorted and therefore our health cards so everything is on my E111 card. (We have just got residency status and get our health cards this week!)

I tried to manage with ibuprofen and pain killers for some weeks, not wanting to bother the doctors at the beginning of the first lockdown and also I have to admit being somewhat in denial. Eventually of course I couldn’t function at all. A GP relative in the UK told me to go and ask for an inflammatory marker blood test and then Prednisone could be prescribed at the correct dose. Unfortunately they couldn’t give me a blood test because of Covid and eventually in desperation I went to a private hospital who did give me the test I was requesting but also every other test and X-ray known to man. I won’t frighten you with the cost of all this, which I hadn’t asked for or been given any explanation about, or what the bill would come to, but I did get a prescription for 36 mg of Prednisone! Then on advice from my GP relative I self medicated from April to July, lowering the dose gradually. I still couldn’t get a blood test from the health centre but they advised me to go to A&E at the local hospítal to ask for an appointment with a rheumatologist. I was given one for late October. A week or so before the appointment I started experiencing symptoms of GCA and on my relative’s advice raised my Pred to 40 mgs. I had got myself down to 8 and was feeling good.

The rheumatologist is wonderful; sympathetic and very competent. She agreed with the 40 mg and ordered an emergency PET scan as she said a biopsy would be inconclusive because of high steroid dose. The scan took 3 months but was ok so that is a great relief although I do still get little niggling temple and jaw pains. Also Ophthalmology consultant has given me the all clear except early stages of cataracts. My rheumatologist is keen to get me off Pred so put me on Metatraxato and Tocilizumab with a rapid decrease in Pred. At the moment I am on 2 mg Pred and self injecting Tocilizumab once a week. The latter is giving me cystitis which has resisted 3 antibiotic courses. I saw her today and almost begged her to take me off it as it’s ruled my life for 3 months but she’s given me some more antibiotics and told me to persevere.

Has anyone else experienced this ‘side effect’ to this drug? She wants me to stop taking Pred in 14 days and stay on Toc for 12 months!

I would really appreciate to hear of other people’s experience of this drug.

[Sophiestree]

I'm sure others will be along to advise you, but just wanted to welcome you to the group. There are many amazing people on here you give excellent advice. Love the cat! Just a curious question on my part, how do you know it's the TCZ that is causing your cystitis? I'm also on pred and TCZ and often prone to cystitis but touch wood have not had any issues so far.

Exciting move for you, albeit not the best timing for you. I hope you'll be able to relax and enjoy it all soon.

[PMRpro Ambassador in reply to Sophiestree]

The most likely reason is that it impairs the immune response to any infection so UTIs are more likely and more difficult to get rid of. Combining MTX and TCZ increases that risk.

[Mahler2 in reply to PMRpro]

Sorry, just seen your first reply. I must say that was exactly what I thought; that the combination had caused it but I stopped MTX 2 months ago.

[PMRpro Ambassador in reply to Mahler2]

The mtx effects lasts for a some weeks, even months so could have been enough for it to start and the TCZ is making getting rid of it harder

[Mahler2 in reply to PMRpro]

Thanks I’ll hang on to that hope!

[Mahler2 in reply to Sophiestree]

Thank you so much for your welcome and reply. The cystitis coincided with the start of TCZ treatment. I had had it before but just a couple of times when sitting around in a wet swimsuit whilst on holiday. It responded immediately to antibiotics which you used to be able to get without a prescription here. This is different and is worst immediately after my injection particularly in the evening and gradually gets slightly better towards the end of the week. But I always have to get up 5 or 6 times a night. I would be really interested to hear your med history; eg How long you have been on both and are you hoping to stop Pred and remain on TCZ it the other way round? As I said my rheumatologist is lovely and we have an interpreter at some consultations but my Spanish is coming slowly and her English is similar! So hearing about others experience is wonderful.

Thanks again

[Sophiestree in reply to Mahler2]

Interesting it happens so quickly. Are you drinking plenty on those days? I am a huge probiotic person, kefir, etc, I think it has really helped me. Cystitis really is horrible.I have LVV, diagnosed after 8 months or so, in Oct 2020, on pred starting with 40mg at first and started TCZ in mid Jan, so just two months in at the moment on that and now tapering pred. To be honest I am not expecting to come off pred completely, plus, as TCZ is only a one year deal, what on earth happens after that? increase the pred? I shall wait and see re that one.

Great to hear your Spanish is coming on well enough to communicate with a medic, I'm impressed, and also even better you like them. I do think that is just as important. My daughter lives in Hong Kong where you can buy most drugs and often comes back with antibiotics!

[Mahler2 in reply to Sophiestree]

Thanks for that advice. I have heard about probiotics and will look into it. By the way, what is LVV?

[Sophiestree in reply to Mahler2]

Large Vessel Vasculitis, the same as GCA, (Giant Cell) but the area of the body is slightly different. I do not have PMR like many on here do, along with their GCA etc.

[Mahler2 in reply to Sophiestree]

I am sorry. I do hope you recover from it soon. The mix of 40 mg pred, MTX and TCZ seems to have zapped my GCA

[Sophiestree in reply to Mahler2]

thank you, I hope you soon find the right dose to help you on your road to recovery. What I have learnt from this marvellous group is that it is not a quick fix, so as soon as you relax into that thought, it won't be so traumatic waiting for an instant fix. You have joined a great group that will really help you when you have questions.

[Mahler2 in reply to Sophiestree]

Thank you, that’s really reassuring

[PMRpro Ambassador]

Has the doctor done cultures? is it really an infection? Cystitis is a symptom - painful urination, and there are several reasons for that.

[Mahler2 in reply to PMRpro]

Yes, after 2 doses on antibiotics and still had the awful symptoms the local doctor said my sample was not infected but gave me another course anyway which again did nothing. My rheumatologist has given me a longer, stronger dose this time so we’ll see what happens this time. Thanks for your reply

[PMRpro Ambassador in reply to Mahler2]

Lord - how to create resistance where there was none!!! It isn't the STRENGTH of the antibiotic that matters - it is that there are actually bacteria there and the abx is the correct one. And the fact that having cystitis etc with no proven bacteria presence means there is something else going on.

[PMRpro Ambassador in reply to PMRpro]

Just occurs to me - did they send it for culture or just use dipstix?

[Mahler2 in reply to PMRpro]

I’m not sure. Actually I remember now; the first test was at local health centre and must have been dipstick and it was very low reading but doctor gave me a 2 day fizzy drink antibiotic which a friend in UK said worked for her. Then 2nd test was sent to hospital and was positive so must have been culture