Off Tocilizumab after six months

[redhouts]

I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me.

I change my specialist at this stage because the first one said something like reduce the Pred and you should be fine .. have a nice life, your immune system should be back to normal within 18 to 2 years. He gave a script for a host of meds and send me back to my GP who is clueless about the disease.

The next Rheumatologist I was then referred to appeared knowledgeable and proactive and prescribed Tocilizumab for 6 months up to last August. At one time I was able to reduce the Pred to 10mg while on the Tocilizumab. and felt really good, got my energy back and pain reduced significantly. However, I have since had a PRM flare-up when I reduce Pred to 9.5mg, I tried increasing back to 10mg which was the last comfortable dose, but that didn't work. Eventually had to increase it to 15mg to get any relief. I'm currently 11.5mg of Pred. It's not always exact since I have to cut the piles into 1/4s myself. I take what I think is 1/2 the dose at 15.30 pm and the other 1/2 at 3.30 am.

I am going for blood tests on the 1st Oct and visit the Rheumie when the results are out. My problem is he told me to ignore what my body is telling me and I didn't, so I am not near the level of reduction he is expecting me to be.

Secondly, it's been a month now since completed the 2 weekly Tocilizumab injections and I think I feel a flare coming up. I feel headachey, blurry-eyed, tight, sore shooting pain and itchy scalp, brain fog, face tingling, numbness in my lower limbs, and some niggling pain in my hips, thighs, and upper arms ...I'm hesitating to increase the dose of Pred again.

But the biggest concern is the GCA flare-up which I fear. Although the headaches go away when I take paracetamol, but not the shooting pain so I'm not sure what's going on...

To top it all I recently had a Covid19 booster, (Sinopharm) I'm not sure if this is a reaction to the vaccine. I did feel very tired the day after the jab, and ever since the aches and pains seem to be getting gradually worse, don't know if this is my imagination.

I hope this makes sense... Thank you all for your patience and help and comments will be appreacited.

[jinasc]

I noticed you had not filled in your profile, completely. Please take a look as this link and then can you complete it.

This makes is so much easier when trying to answer a question. Countries have different health systems as well.

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

“Although the headaches go away when I take paracetamol, but not the shooting pain so I'm not sure what's going on..”

If the headaches were GCA then no way would they go away with paracetamol. Plus it’s highly unlikely that GCA would have been controlled by 25mg Pred, the lowest starting dose is usually 40mg…

Think you need a new Rheumy -preferably one who doesn’t tell you to ignore what you body is telling you.

You may be correct in thinking your current aches and pains may be related to covid vaccine -but could also be the fact the TCZ has been stopped -or a combination of the two.

To be honest I think you need a hard discussion with your doctor to find out exactly what is going on.

[PMRpro Ambassador]

Why are you splitting the dose? Do you need to do that for 24 hour relief from the PMR symptoms?

Only half of GCA patients get to zero pred with tocilizumab - typically the other half need about 8-10mg so that might be the reason for your problems. This is because GCA has at least 3 different underlying causes of the inflammation and tocilizumab only controls one of them. If the GCA is still active - and it is quite likely after only 6 months of TCZ - then you will need more pred once you reduce the TCZ.

I do hope the blood tests show something.

[Hopingsail]

You messaged me about paracetomol - not me though! Sorry.