Flare confirmed with PET scan

[Frenchduck]

This is an update which I promised from my previous post and I have some questions at the end.

About a month ago I reported that I had stopped Tocilizumab and I was waiting to see if the GCA had gone into remission. I had no GCA symptoms and no eye problems confirmed by the ophthalmologist. I felt better but the only problem was that the CRP continued to rise from about a month after I stopped the injections, hovering between 40-50 and it never reduced significantly.

I didn't believe that I was having a relapse it as I didn't have any of the symptoms that I can remember having before my diagnosis in April 2020. I assumed therefore that the inflammation had another reason. Also, to confirm my belief, my GP diagnosed a throat infection on 8 August and gave me antibiotics which I finished after 7 days and I felt much better. I was convinced that this must have been the cause of the inflammation and also I had mosquito bites which always cause a bad reaction. As previously instructed by the consultant I continued to test the CRP regularly. I also made an large annual blood test that she prescribes and all other results were normal except for the CRP.

I saw the GP again on Monday this week and there was a letter on his desk from the consultant saying she was concerned by the CRP results and something needed to be done. She said if I had any symptoms it was virtually back to square one with the TCZ and cortisone treatment. The GP did a very thorough examination including an ECG and he could not identify any clinical symptoms. She said if there were no symptoms we should do a PET scan quickly to see what is going on.

This is where the French health system has to be applauded as I got the PET scan yesterday morning. Usually there is an 8-10 days wait. Yesterday afternoon the secretary telephoned to say that the disease was visible and that I must take the TCZ that day and also 40 mg of cortisone. I had a pack of 20 mg prednisolone for emergency use and 3 injections in the fridge.I took the injection but as it was late in the day I decided to take just 20mg and I took 40mg this morning so I am on my second day of treatment today.

Later this afternoon I got more details of the treatment sent by email from the consultant. I must take the TCZ weekly again for 6 months then start spacing it out after that. From what she said in her letter to the GP this will be for at least 2 more years. She is also putting me on a "short" course of cortisone and this is where I have the questions for the more experienced people on this forum.

The number of days for each dose is the same (5) and it lasts for 35 days.

40mg for 5 days, then 30mg, then 20mg, then 15mg, then 10mg, then 5mg, then 2.5mg and "then attempt to stop". Obviously during this time I will be having weekly TCZ.

QUESTIONS

How does this 35 day tapering course sound to you experts?

Am I in any danger especially regarding the adrenals?

Also, at the moment I'm taking prednisolone because that was what the pharmacy gave me the last time. When I go with the new prescription should I ask for prednisone or prednisolone? I thought prednisolone might be better for my liver but is there any difference in the strength or problems with withdrawal between the two?

I know it's been a long post but I hope the information might be helpful for others. We hear a lot about people who have symptoms and normal CPR but not usually the other way round.

Thank you all you wonderful people for listening, it has been a really anxious time for me but I have some relief in knowing the truth! I'm not off the hook yet 😆.

[PMRpro Ambassador]

Oh what a shame - but it was to be expected I fear.

Personally I don't like this assumption that TCZ works instantly - my rheumy says it can take time to work and it certainly took me a few months to feel it was. It shouldn't be a problem with adrenal function is it is a taper from the start and you shouldn't experience too much suppression in a month of high dose.

As to prednisolone or prednisone, prednisolone is better for the liver and works faster, doesn't have to be processed by the liver. Depends what they offer you I suppose.

Like me, I bet you are glad you are this side of the channel!!!

[Frenchduck in reply to PMRpro]

Thank you for your prompt and reassuring reply. I'll try to get the prednisolone again if I can.

Yes, you can say that again!! Like you have said before it makes it impossible to consider moving back to the UK even if we wanted to.

[PMRpro Ambassador in reply to Frenchduck]

Yes - there are problems here but like the NHS 20+ years ago. And I would lose all the medication that works for me. If I am going to be left without them and immobile, I shall enjoy myself here here until I'm starting to struggle here. I said to my daughter a few minutes ago, it isn't even appealing to go over on holiday! My White Cross holiday insurance is at the top level - immediate air repatriation. Just in case ...

[5lupins in reply to Frenchduck]

Glad you have received excellent treatment, and now back on meds. I have had GCA for twelve years but flared in aorta this year after lowering methotrexate so I understand some of how you feel.

Since March I have had an ultrasound, and three MRI, and a MRA for various problems and a PET scan two days after seeing consultant. ECG next week and a DEXA scan next month. Yes it has been a worrying time but everyone has been thorough and the four consultants I have seen good. I agree the nhs is in a mess but there are many people in our health service who are giving there all and have been patient and kind with me.

Also I have the Peak District just a few miles away which helps. 🤗

Going to shut the curtains now and have a quiet day. J

[Flipper12345yellow]

Wow, sorry that I can't offer any advice but you are so lucky to be so well looked after. All the best.

[Frenchduck in reply to Flipper12345yellow]

You are right. Thank you.

[5lupins in reply to Frenchduck]

Hi frenchduck, i feels like I was a bit defensive in my reply which was not my intention. I have been quite worried over the last few months with sarcoma scares and brain and aorta scans that I need to trust that the nhs will be there for us all and improve going forward. Take care Jen

[Frenchduck in reply to 5lupins]

I was going to reply to your last post so I'll reply to this one now. I don't think you were being defensive and I would always praise the NHS myself. I was born and lived most of my life in the North East of England and luckily I was in good health. However, when I needed the NHS for 3 operations (major surgery but not life threatening) and to give birth to my 5 children, in two different hospitals, over a period of 9 years, I couldn't have asked for more. Anti-natal care, delivery and post natal were all carried out to such a high standard and by caring professionals. No scans in those days but close monitoring on a regular basis (1976-1985). I put my trust in them completely.

It seems to me it's "the powers that be" who call the shots and are the ones who make life difficult for the NHS workers and consequently the patients. But even with that said I have first hand recent experience in my own family and with a close friend where procedures have been carried out impeccably and with no waiting. I sometimes wonder if it depends on where you live but in the North East the facilities were always good perhaps because of the teaching hospitals there. Other countries in Europe can provide a better service because things are funded differently and organised a bit better.

It sounds like you've had good treatment and I think you must continue to trust them. As you say the NHS workers are giving their all. They are working in difficult circumstances and we should be supporting them.

I hope after all your scans you will receive the treatment you need for your road to recovery. Take care and best wishes.

[5lupins in reply to Frenchduck]

Thank you so much for your kind reply. 🌸

[Ridge]

Wow! What help! And not to feel a nuisance! It really brings home to us in good old Britain what has happened to our NHS. I do hope we climb out of this trough. It is desperately sad and I worry about the wonderful people who work in it.

[Dexter911]

Thank you so much for this post with all its information! Very helpful at the moment as I am in a similar situation!

I stopped my every 2 weeks Tocilizumab injections as I was advised too by Rheumatology as I was having 2 teeth extracted. It is now 6 weeks since my last injection and dental procedure has been delayed until 20/9 now which will be 7 + weeks by that time.

I am wary of headaches etc and this heatwave in UK is not helping together with my controlled high blood pressure! I also had an aortic aneurysm which ruptured 5 years ago and had emergency open heart surgery!

So a bit twitchy about dental work anyway but necessary as a grumbling abcess causing the problem!

I am having a routine 6 monthly blood test Monday as requested by pharmacy to continue my prescription for Tocilizumab so I will know maybe how my system is managing or not!!

I hope it is managing as would not want to go on Prednisolone again as came off due to all problems it caused but interested in short term use for 30 days you mentioned? Just in case.

I then have a blood test a week after dental work when that will have hopefully healed to determine things also!

In the uk, not in France. Any thoughts on all this appreciated?!

[Sharitone in reply to Dexter911]

I hope your blood test were ok.

I think you would get more answers to your questions if you did a separate post, as lots of people won't have read this thread after you posted. I think lots of people here have had dental treatment whilst on pred .