Sticky Blood-Hughes Syndrome Support
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Joint pains

Hi all I haven't posted on her for a while but things are getting gradually worse for me. All my joints hurt, ankles, knees, elbows and wrists. Wonder if I should be on plaquenil as lots of people on here seem to be. Or also wondering if it could be that my INR is too high. My range is 3-4 but is still not settled and is going up and down like a yo-yo and has been like this for months. Could this also cause it do you think? It went up to 4.6 a couple of weeks ago then dropped to 4.2 then to 3.5. I still also get cluster migraines no matter what my INR is. Feel like I'm falling apart. I have had APS for 25 years but only really in last 2 years I have been having all these problems. Any ideas please? Not due to see Prof Hunt again until October.

2 Replies

Hi, you could try ringing Professor Hunt's clinic to see if they could bring the appointment forward, I am sure she will help you when you actually get to your appointment, she is definitely the best person to talk to about all this. It is a complicated condition and I am sure she will look at all the associated issues, such as iron, b12 and D, also your thyroid, they are pretty thorough in that clinic. Definitely ask her about Plaquenil. MaryF


Hello, I started getting worse joint pain, in the same places you describe. I saw professor Hunt for the first time a couple of weeks ago and she is pretty sure I also have Lupus. 10 phials of blood for testing (she is very thorough!). She put me on hydroxycochlorine (Plaquenil) and said it would help once it kicks in but it takes at least six weeks. Good luck, see if you can get a cancellation if the pain I too bad. I know how awful the waiting can be. I knew in February that I needed to be on Plaquenil, but had to wait till now to actually get it (only a rheumatologist can prescribe it).


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