UP DATE

[shazstep]

Both liver and spleen enlarged. I am on the list for colonoscopy and endoscopy, wait time is about 2 months. I still have monthly blood tests and with each one my esr is increasing. It is now 37. While I was on Actemra injections it was down to about 5. I saw gp last week and he said if it is over 40 at next blood test I will need to increase from 5mg to 10mg prednisolone.

Going to the shops today my legs were back to feeling like jelly. I doubt I will be able to last until next bloods to increase dosage.

Any thoughts?

[Theziggy]

Waiting list sounds optimistic

[DorsetLady PMRGCAuk volunteer]

Why don’t you increase to 7,5mg and see if that makes you feel any better.

If your ESR is increasing steadily, your doctor should be doing something about it, not waiting for 40. That’s not a magic number... the fact that it is increasing is the key point.

[PMRpro Ambassador]

First of all - if the rising ESR is due to PMR then it will have been normal while on Actemra/tocilizumab. The usual blood markers of ESR and CRP are meaningless when on it as it stops the process that creates the proteins that make them go up. As DL says - it is not normal that it is now rising at all and 37 is already very high. If you increase the pred now you may get away with a smaller increase in the dose.

And don't tell me aren't at least a bit worried about the results and waiting for the colonoscopy?

[shazstep]

I was in tears when first told but am over it now. No point dwelling on it. The damage is done they just have to find out how much. The whole thing gets me down on a regular basis but then there are a lot of members out there whose situation is a lot worse, so that stops me feeling so sorry for myself.

I will try 7.5 for a week and see how I feel.

Thanks for words of wisdom.