LVV Relapse Update

[LemonZest11]

Hello old pals, It’s been a couple of months so here’s the latest … my neutrophils refuse to behave!! We stretched the Actemra shots to fortnightly but they have dropped to 0.4 and doc is concerned. I am down to 5mgs of pred and feeling absolutely no pain so, since we need to either stretch out the Actemra again or stop, I suggested that we stop for now so that we can get a more accurate reading of inflammatory markers. It was at 4 weekly Actemra that the inflammation showed up and I’d like to know where that sits at the moment. But … why no pain??? I think Mrs PMR might have gone into hiding, but Mr LVV wants to play.

[PMRpro Ambassador]

So frustrating isn't it!!

[LemonZest11 in reply to PMRpro]

Yes it is, but what can you do? 🤷‍♀️ I’m not in pain … that’s a plus!

[PMRpro Ambassador in reply to LemonZest11]

Certainly is - question is, what will happen without Actemra? But does add to the knowledge about the stuff. Wonder how often this happens when it is being used for RA?

[LemonZest11 in reply to PMRpro]

Neutropenia is a common side-effect of Actemra. We managed it last time by spacing jabs 3 weekly. This might be what we do again, but in the meantime, I just want to know that the inflammation is under control, given the damage to my calf vein. My doc is making enquiries with a Haematologist.

[PMRpro Ambassador in reply to LemonZest11]

Not been noted for me - but not monitored that often I suppose. What worried me was that the only pain relief the pain clinic approved of ALSO has the same effect on neutrophils and both seemed a bit scary to me. It really didn't work that well so I stopped using it anyway. But the back muscle pain is so much better since the zolendronic acid infusion - the most common cause of back muscle spasms is a spinal fracture. Is it coincidence?

[LemonZest11 in reply to PMRpro]

That’s interesting, those bloody neutrophils! The docs seem really concerned about the possibility of serious infection but I slept with an unwell 7 year old boy coughing all over my face recently. I saw him a week later and he asked, did you catch it Juju? No! So my immune system seems to be OK. Do you have a fracture???

[PMRpro Ambassador in reply to LemonZest11]

My rheumy ordered a spinal x-ray - he does do them fairly regularly and anytime I have new pain. He had done one in the early spring after my husband died when I had excruciating pain one morning but there was nothing identified then. He did one last New Year - and at the MDT meeting the radiologist pointed something out that could be a compression fracture. No idea if it was considered old or new. So Christian decided it needed a bisphosphonate and I chose the infusion. And the entire summer, the pain has improved. Last November I actually bought a snazzy modern rollator because I couldn't walk to the village and carry a litre of milk back without making the pain worse. It is sitting in my bedroom, unpacked but unused as yet! I can't carry much but I can carry a small bag full. I make sure most shopping is done in one go with the car - the shop in the village has some things I use but I have to go to 2 other shops which aren't walking distance if I'm not in the mood to compromise.

[LemonZest11 in reply to PMRpro]

Oh what a wonderful story PP. You sound so light and optimistic and the image of you walking with your small bag to the village and back is so vivid. I love this story. I think the future is looking up for you. Small steps, as you are taking, but real progress too. Keep that rollator in wraps and long live the infusion!!

[PMRpro Ambassador in reply to LemonZest11]

You can't imagine how that made me feel - I needed that!!! Thank you.